BEGIN:VCALENDAR VERSION:2.0 PRODID:-//VHL Alliance - ECPv6.13.2.1//NONSGML v1.0//EN CALSCALE:GREGORIAN METHOD:PUBLISH X-WR-CALNAME:VHL Alliance X-ORIGINAL-URL:https://vhl.org X-WR-CALDESC:Events for VHL Alliance REFRESH-INTERVAL;VALUE=DURATION:PT1H X-Robots-Tag:noindex X-PUBLISHED-TTL:PT1H BEGIN:VTIMEZONE TZID:America/New_York BEGIN:DAYLIGHT TZOFFSETFROM:-0500 TZOFFSETTO:-0400 TZNAME:EDT DTSTART:20240310T070000 END:DAYLIGHT BEGIN:STANDARD TZOFFSETFROM:-0400 TZOFFSETTO:-0500 TZNAME:EST DTSTART:20241103T060000 END:STANDARD BEGIN:DAYLIGHT TZOFFSETFROM:-0500 TZOFFSETTO:-0400 TZNAME:EDT DTSTART:20250309T070000 END:DAYLIGHT BEGIN:STANDARD TZOFFSETFROM:-0400 TZOFFSETTO:-0500 TZNAME:EST DTSTART:20251102T060000 END:STANDARD END:VTIMEZONE BEGIN:VTIMEZONE TZID:America/Chicago BEGIN:DAYLIGHT TZOFFSETFROM:-0600 TZOFFSETTO:-0500 TZNAME:CDT DTSTART:20240310T080000 END:DAYLIGHT BEGIN:STANDARD TZOFFSETFROM:-0500 TZOFFSETTO:-0600 TZNAME:CST DTSTART:20241103T070000 END:STANDARD END:VTIMEZONE BEGIN:VEVENT DTSTART;TZID=America/New_York:20250303T200000 DTEND;TZID=America/New_York:20250303T210000 DTSTAMP:20260405T182450 CREATED:20240605T171257Z LAST-MODIFIED:20240605T171257Z UID:10000081-1741032000-1741035600@vhl.org SUMMARY:March Patient/Caregiver Call DESCRIPTION:First Monday of every month. \n  \nAll are welcome to join—whether you have questions or just want to find out more. There will be time near the end of the call for an open discussion of other VHL-related topics. We look forward to another thoughtful discussion! \n  \nThis facilitated call takes place on the first Monday of every month at 8 PM ET. \n  \nCall topic:\nLearn mindfulness techniques that reduce persistent pain (physically or mentally) and create a sense of peace and control. \n  \nIf you would like to join the call list please click here to register. \n  URL:https://vhl.org/vhla-event/mar-patient-caregiver-call-2025/ LOCATION:Zoom / Online CATEGORIES:VHL Patient/Caregiver Call ATTACH;FMTTYPE=image/jpeg:https://vhl.org/wp-content/uploads/2024/06/March-3-Learn-mindfulness-techniques-to-reduce-constant-pain.jpg END:VEVENT BEGIN:VEVENT DTSTART;VALUE=DATE:20250228 DTEND;VALUE=DATE:20250303 DTSTAMP:20260405T182450 CREATED:20241113T150928Z LAST-MODIFIED:20241113T154814Z UID:10000105-1740700800-1740959999@vhl.org SUMMARY:VHL Alliance Young Adult Retreat | Phoenix\, AZ DESCRIPTION:  \nCalling all young adults (ages 21-36) impacted by VHL! Join us in Phoenix\, Arizona\, from February 28th to March 2nd\, 2025\, for the Young Adult Retreat hosted by the VHL Alliance in partnership with the Mayo Clinic in Scottsdale. This weekend is designed for young adults with VHL to connect\, learn\, and build a supportive community. \n  \nThroughout the weekend you’ll have the chance to engage directly with VHL experts\, gain insights into the latest in VHL care\, and connect with other young adults who understand the unique challenges of living with VHL. Whether it’s through educational sessions\, group discussions\, or casual conversations\, this event is crafted to empower and inspire you. \n  \nThis year\, our focus will shift from medical presentations to exploring the psychosocial side of living with VHL. The Young Adult Retreat will feature facilitated group discussions\, engaging workshops\, and supportive sessions that dive into topics like resilience\, coping strategies\, navigating insurance coverage\, and building a balanced life with VHL. It’s an opportunity to share experiences\, ask questions\, and gain a deeper understanding of how to thrive both personally and socially. Detailed schedule and lodging information to come soon! \n  \nRegistration Details\nThe registration fee is $75 and covers all accommodations\, meals\, and activities for the weekend. Financial assistance is available for travel costs through our scholarship program—simply reach out to Josh Mann at josh.mann@vhl.org to learn more. \n  \nClick here to register! URL:https://vhl.org/vhla-event/vhl-alliance-young-adult-retreat-phoenix-az/ CATEGORIES:In Person Event ATTACH;FMTTYPE=image/jpeg:https://vhl.org/wp-content/uploads/2024/11/YAR-2025-Promo-Image.jpg END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20250212T193000 DTEND;TZID=America/New_York:20250212T203000 DTSTAMP:20260405T182450 CREATED:20240605T173959Z LAST-MODIFIED:20240605T173959Z UID:10000092-1739388600-1739392200@vhl.org SUMMARY:February Low/No Vision Call DESCRIPTION:Second Wednesday of every month. \n  \nLiving with low or no vision creates unique challenges for VHL patients. The Low/No Vision Monthly Discussion Call is specifically designed for support and sharing of important tips and resources. \n  \nOur call topic:\n \n“What two things does blindness make most difficult for you and what workarounds have you found for them?” \n  \nAll are welcome to join—whether you have questions or just want to find out more. There will be time near the end of the call for an open discussion of other related topics. We look forward to another thoughtful discussion! \n  \nThis facilitated call takes place on the 2nd Wednesday of every month at 7:30 PM ET. If you would like to join the call\, please fill out the form below. \n  \nIf you would like to join the call list please click here to register. URL:https://vhl.org/vhla-event/feb-low-no-vision-call-2025/ LOCATION:Zoom / Online CATEGORIES:Low/No Vision Monthly Call ATTACH;FMTTYPE=image/jpeg:https://vhl.org/wp-content/uploads/2024/06/Feb-12-What-two-things-does-blindness-make-most-difficult-for-you.jpg END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20250203T200000 DTEND;TZID=America/New_York:20250203T210000 DTSTAMP:20260405T182450 CREATED:20240605T171144Z LAST-MODIFIED:20240605T171144Z UID:10000080-1738612800-1738616400@vhl.org SUMMARY:February Patient/Caregiver Call DESCRIPTION:First Monday of every month. \n  \nAll are welcome to join—whether you have questions or just want to find out more. There will be time near the end of the call for an open discussion of other VHL-related topics. We look forward to another thoughtful discussion! \n  \nThis facilitated call takes place on the first Monday of every month at 8 PM ET. \n  \nCall topic:\nLearn three ways to be more resilient. \n  \nIf you would like to join the call list please click here to register. \n  URL:https://vhl.org/vhla-event/feb-patient-caregiver-call-2025/ LOCATION:Zoom / Online CATEGORIES:VHL Patient/Caregiver Call ATTACH;FMTTYPE=image/jpeg:https://vhl.org/wp-content/uploads/2024/06/Feb-3rd-Three-ways-to-be-more-resilient.jpg END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20250120T200000 DTEND;TZID=America/New_York:20250120T210000 DTSTAMP:20260405T182450 CREATED:20240605T193911Z LAST-MODIFIED:20240605T193911Z UID:10000100-1737403200-1737406800@vhl.org SUMMARY:January Parents of VHL Patients Call DESCRIPTION:Third Monday of every other month. \nPlease join us on the third Monday every other month to discuss how we can help our children thrive with VHL. \n  \nOur topic\n“How to increase positive emotions in your child to lessen the intense negative ones.” \n  \nAll parents of VHL patients are welcome to join—whether you have questions or just want to find out more. There will be time near the end of the call for an open discussion of other VHL-related topics. We look forward to another thoughtful discussion! \n  \nThis facilitated call takes place on the third Monday of every other month at 8 PM ET. If you would like to join the call\, please fill out the form below. \n  \nIf you would like to join the call list please click here to register. \n  URL:https://vhl.org/vhla-event/jan-parents-of-vhl-patients-call-2025/ LOCATION:Zoom / Online CATEGORIES:Parents of VHL Patients Call ATTACH;FMTTYPE=image/jpeg:https://vhl.org/wp-content/uploads/2024/06/Jan-19-How-to-increase-positive-emotions-in-your-child-and-lessen-negative-emotions.jpg END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20250108T193000 DTEND;TZID=America/New_York:20250108T203000 DTSTAMP:20260405T182450 CREATED:20240605T173900Z LAST-MODIFIED:20240605T173900Z UID:10000091-1736364600-1736368200@vhl.org SUMMARY:January Low/No Vision Call DESCRIPTION:Second Wednesday of every month. \n  \nLiving with low or no vision creates unique challenges for VHL patients. The Low/No Vision Monthly Discussion Call is specifically designed for support and sharing of important tips and resources. \n  \nOur call topic:\n \n“How do we stand up for ourselves and each other?” \n  \nAll are welcome to join—whether you have questions or just want to find out more. There will be time near the end of the call for an open discussion of other related topics. We look forward to another thoughtful discussion! \n  \nThis facilitated call takes place on the 2nd Wednesday of every month at 7:30 PM ET. If you would like to join the call\, please fill out the form below. \n  \nIf you would like to join the call list please click here to register. URL:https://vhl.org/vhla-event/jan-low-no-vision-call-2025/ LOCATION:Zoom / Online CATEGORIES:Low/No Vision Monthly Call ATTACH;FMTTYPE=image/jpeg:https://vhl.org/wp-content/uploads/2024/06/Jan-8-How-do-we-stand-up-for-ourselves-and-each-other.jpg END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20250106T200000 DTEND;TZID=America/New_York:20250106T210000 DTSTAMP:20260405T182450 CREATED:20240605T171041Z LAST-MODIFIED:20240605T171200Z UID:10000079-1736193600-1736197200@vhl.org SUMMARY:January Patient/Caregiver Call DESCRIPTION:First Monday of every month. \n  \nAll are welcome to join—whether you have questions or just want to find out more. There will be time near the end of the call for an open discussion of other VHL-related topics. We look forward to another thoughtful discussion! \n  \nThis facilitated call takes place on the first Monday of every month at 8 PM ET. \n  \nCall topic:\nHow to navigate incessant thoughts that weigh us down. \n  \nIf you would like to join the call list please click here to register. \n  URL:https://vhl.org/vhla-event/jan-patient-caregiver-call-2025/ LOCATION:Zoom / Online CATEGORIES:VHL Patient/Caregiver Call ATTACH;FMTTYPE=image/jpeg:https://vhl.org/wp-content/uploads/2024/06/Jan-6-How-to-navigate-the-incessant-thoughts-that-weigh-us-down.jpg END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20241211T193000 DTEND;TZID=America/New_York:20241211T203000 DTSTAMP:20260405T182450 CREATED:20240605T173747Z LAST-MODIFIED:20240605T173747Z UID:10000090-1733945400-1733949000@vhl.org SUMMARY:December Low/No Vision Call DESCRIPTION:Second Wednesday of every month. \n  \nLiving with low or no vision creates unique challenges for VHL patients. The Low/No Vision Monthly Discussion Call is specifically designed for support and sharing of important tips and resources. \n  \nOur call topic:\n \n“Holidays and all that comes with them: large gatherings\, chores\, performances\, etc.” \n  \nAll are welcome to join—whether you have questions or just want to find out more. There will be time near the end of the call for an open discussion of other related topics. We look forward to another thoughtful discussion! \n  \nThis facilitated call takes place on the 2nd Wednesday of every month at 7:30 PM ET. If you would like to join the call\, please fill out the form below. \n  \nIf you would like to join the call list please click here to register. URL:https://vhl.org/vhla-event/dec-low-no-vision-call-2024/ LOCATION:Zoom / Online CATEGORIES:Low/No Vision Monthly Call ATTACH;FMTTYPE=image/jpeg:https://vhl.org/wp-content/uploads/2024/06/Dec-11-Holidays-and-all-that-comes-with-them-chores-family-etc.jpg END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20241209T200000 DTEND;TZID=America/New_York:20241209T210000 DTSTAMP:20260405T182450 CREATED:20240605T170950Z LAST-MODIFIED:20241104T155405Z UID:10000078-1733774400-1733778000@vhl.org SUMMARY:December Patient/Caregiver Call DESCRIPTION:First Monday of every month. \n  \nAll are welcome to join—whether you have questions or just want to find out more. There will be time near the end of the call for an open discussion of other VHL-related topics. We look forward to another thoughtful discussion! \n  \nThis facilitated call takes place on the first Monday of every month at 8 PM ET. *Please note that this call is delayed one week due to a scheduling conflict* \n  \nCall topic:\nCreating healthy relationships with good communication skills \n  \nIf you would like to join the call list please click here to register. \n  URL:https://vhl.org/vhla-event/dec-patient-caregiver-call-2024/ LOCATION:Zoom / Online CATEGORIES:VHL Patient/Caregiver Call ATTACH;FMTTYPE=image/jpeg:https://vhl.org/wp-content/uploads/2024/06/Dec-2-Creating-healthy-relationships-with-good-communication-skills.jpg END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20241118T200000 DTEND;TZID=America/New_York:20241118T210000 DTSTAMP:20260405T182450 CREATED:20240605T193817Z LAST-MODIFIED:20240605T193817Z UID:10000099-1731960000-1731963600@vhl.org SUMMARY:November Parents of VHL Patients Call DESCRIPTION:Third Monday of every other month. \nPlease join us on the third Monday every other month to discuss how we can help our children thrive with VHL. \n  \nOur topic\n“Increase your wellbeing by increasing your sense of happiness despite extremely stressful circumstances.” \n  \nAll parents of VHL patients are welcome to join—whether you have questions or just want to find out more. There will be time near the end of the call for an open discussion of other VHL-related topics. We look forward to another thoughtful discussion! \n  \nThis facilitated call takes place on the third Monday of every other month at 8 PM ET. If you would like to join the call\, please fill out the form below. \n  \nIf you would like to join the call list please click here to register. \n  URL:https://vhl.org/vhla-event/november-parents-of-vhl-patients-call-2024/ LOCATION:Zoom / Online CATEGORIES:Parents of VHL Patients Call ATTACH;FMTTYPE=image/jpeg:https://vhl.org/wp-content/uploads/2024/06/Nov-17-Increase-your-wellbeing-by-increasing-your-sense-of-happiness-in-stressful-circumstances.jpg END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20241114T183000 DTEND;TZID=America/New_York:20241114T193000 DTSTAMP:20260405T182450 CREATED:20241008T141354Z LAST-MODIFIED:20241008T150006Z UID:10000103-1731609000-1731612600@vhl.org SUMMARY:Advances in VHL Disease and HIF2a Inhibitors: Insights from Recent Research with Othon Iliopoulos\, MD\, PhD DESCRIPTION:  \nDate & Time: Nov 14th\, 6:30 pm EST \n  \nLocation: Zoom (Link to be provided upon registration) \n  \nJoin us for an informative webinar featuring renowned VHL researcher Dr. Othon Iliopoulos as he delves into the latest advancements in understanding Von Hippel-Lindau (VHL) disease and the role of HIF2a inhibitors in treatment. \n  \nDr. Iliopoulos will present key insights from his recently published article\, “Updated Findings with Belzutifan in Von Hippel-Lindau Disease-Associated CNS Hemangioblastomas\,” highlighting the significant impacts of belzutifan on patient outcomes. He will discuss the mechanisms of VHL disease\, the role of HIF2a in tumorigenesis\, and the therapeutic potential of HIF2a inhibitors. \n  \nKey Topics: \n\nOverview of VHL disease and its implications\nMechanism of action of HIF2a inhibitors\nRecent clinical findings and their relevance for patient care\nFuture directions in VHL disease research and treatment strategies\n\n  \nThis webinar is an excellent opportunity for healthcare professionals\, researchers\, and anyone interested in the latest developments in VHL disease to engage with Dr. Iliopoulos and gain valuable insights into ongoing research and clinical applications. \n  \nRegister now to secure your spot and be part of this engaging discussion! URL:https://vhl.org/vhla-event/advances-in-vhl-disease-and-hif2a-inhibitors-insights-from-recent-research-with-othon-iliopoulos-md-phd/ LOCATION:Zoom / Online CATEGORIES:Workshop ATTACH;FMTTYPE=image/jpeg:https://vhl.org/wp-content/uploads/2024/10/VHL-101-Research-Update-with-Othon-Iliopoulos-MD.jpg END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20241113T193000 DTEND;TZID=America/New_York:20241113T203000 DTSTAMP:20260405T182450 CREATED:20240605T173649Z LAST-MODIFIED:20241024T134217Z UID:10000089-1731526200-1731529800@vhl.org SUMMARY:November Low/No Vision Call DESCRIPTION:Second Wednesday of every month. \n  \nLiving with low or no vision creates unique challenges for VHL patients. The Low/No Vision Monthly Discussion Call is specifically designed for support and sharing of important tips and resources. \n  \nOur call topic:\n \n“Preparing for natural disasters with vision impairment.” \n  \nAll are welcome to join—whether you have questions or just want to find out more. There will be time near the end of the call for an open discussion of other related topics. We look forward to another thoughtful discussion! \n  \nThis facilitated call takes place on the 2nd Wednesday of every month at 7:30 PM ET. \n  \nIf you would like to join the call list please click here to register. URL:https://vhl.org/vhla-event/nov-low-no-vision-call-2024/ LOCATION:Zoom / Online CATEGORIES:Low/No Vision Monthly Call ATTACH;FMTTYPE=image/jpeg:https://vhl.org/wp-content/uploads/2024/06/prepping-for-disaster-with-blindness.jpg END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20241104T200000 DTEND;TZID=America/New_York:20241104T210000 DTSTAMP:20260405T182450 CREATED:20240605T170843Z LAST-MODIFIED:20240605T170843Z UID:10000077-1730750400-1730754000@vhl.org SUMMARY:November Patient/Caregiver Call DESCRIPTION:First Monday of every month. \n  \nAll are welcome to join—whether you have questions or just want to find out more. There will be time near the end of the call for an open discussion of other VHL-related topics. We look forward to another thoughtful discussion! \n  \nThis facilitated call takes place on the first Monday of every month at 8 PM ET. \n  \nCall topic:\nLearn to understand what truly matters to you and create a plan to create an incredibly rich life-despite all that VHL entails. \n  \nIf you would like to join the call list please click here to register. \n  URL:https://vhl.org/vhla-event/nov-patient-caregiver-call-2024/ LOCATION:Zoom / Online CATEGORIES:VHL Patient/Caregiver Call ATTACH;FMTTYPE=image/jpeg:https://vhl.org/wp-content/uploads/2024/06/Nov-4th-Learn-to-understand-what-truly-matters-to-you-to-create-a-rich-life.jpg END:VEVENT BEGIN:VEVENT DTSTART;VALUE=DATE:20241019 DTEND;VALUE=DATE:20241021 DTSTAMP:20260405T182450 CREATED:20240330T131942Z LAST-MODIFIED:20241017T174243Z UID:10000070-1729296000-1729468799@vhl.org SUMMARY:16th International VHL Medical Symposium | Milan\, Italy DESCRIPTION:Join the leading VHL researchers\, physicians\, and experts in Milan!\nWhat: The 16th International VHL Medical Symposium\, hosted by the VHL Alliance and the San Raffaele Scientific Institute\, will bring scientists\, clinicians and advocates together for two days of collaboration\, idea exchange\, and thought leadership. \n  \nWhere: UniSR Campus Milano Olgettina (Via Olgettina 58\, Milan) on the second floor of the Dibit 1 building\, in the Caravella S. Maria Lecture Hall. \n \n \n \nThis link will provide you with direct step-by-step instructions on how to get there from wherever you are coming from: https://maps.unisr.it/spaces/606b1200dad60d30a2348971 \n  \nWhen: October 19-20\, 2024 \n  \nRegistration Fee: Standard $175 / Residents $100 / Students FREE [please note that the student registration does not include catering] / Corporate $750. Click here to register. \n  \nLodging: Hotel Raffaele Via Olgettina\, 60\, 20132 Milano MI\, Italy \n \n  \nCME Accreditation: \n  \n \n“The 16th International VHL Medical Symposium\, Milan\, Italy 19/10/2024 – 20/10/2024 \, has been accredited by the European Accreditation Council for Continuing Medical Education (EACCME®) with 14.0 European CME credits (ECMEC®s). Each medical specialist should claim only those hours of credit that he/she actually spent in the educational activity.” \n  \n“Through an agreement between the Union Européenne des Médecins Spécialistes and the American Medical Association\, physicians may convert EACCME® credits to an equivalent number of AMA PRA Category 1 CreditsTM. Information on the process to convert EACCME® credit to AMA credit can be found at https://edhub.ama-assn.org/pages/applications . \n  \n“Live educational activities\, occurring outside of Canada\, recognised by the UEMS-EACCME® for ECMEC®s are deemed to be Accredited Group Learning Activities (Section 1) as defined by the Maintenance of Certification Program of the Royal College of Physicians and Surgeons of Canada.” \n \n  \nSCIENTIFIC COORDINATOR: \nDr. Alessandro Larcher\, Milan (Italy) \n \n  \nSCIENTIFIC COMMITTEE: \nDr. Ruhee Dere\, Huston – TX (USA) \nDr. Othon Iliopoulos\, Boston – MA (USA) \nProf. Andrea Salonia\, Milan (Italy) \n \n  \nORGANIZING COMMITTEE: \nJoshua Mann\, Boston – MA (USA) \nJanet Thompson\, Boston – MA (USA) \n  \nAbstract Submission Details \nThe deadline for abstract submissions is July 3rd. A link to submit abstracts will be provided to event attendees by email following the registration process. Please note that there is a 400 word maximum for abstract submissions.  \n  \n \n Register Now\n \n \n\n\n\n\nSaturday\, 19th October 2024 \n*Please note that each 20 minute time block will be divided into 15 minutes of presentation time and 5 minutes for Q&A \n\n\n\n\n8:30 – 09:00 \n\n\nRegistration \n\n\n\n\n09:00 – 09:05 \n\n\nWelcome and Introduction \n\n\nModerators:  \nR. Dere (US) \nO. Iliopoulos (US)\,  \nA. Larcher (IT)\,  \nA. Salonia (IT)\,  \nJ. Thompson (US) \n\n\n\n\n09:05 – 09:10 \n\n\nOpening Remarks \n\n\nModerator:  \nK. Rathmell (US) \n\n\n\n\nSession 1 – Special Lecture \n\n\n\n\n09:10-09:30 \n\n\nBelzutifan Development: Intrinsic and Acquired Resistance \n\n\nJ. Brugarolas (US) \n\n\n\n\nSession 2 – Clinical management of VHL tumors – surveillance\, diagnosis\, and treatment \n\n\nModerators:  \nR. van Leeuwaarde (NL)\, \nA. Veltri (IT) \n\n\n\n\n09:30 – 09:50 \n\n\nRecommendations for management of VHL-related pancreatic manifestations \n\n\nA. Tirosh (IL) \n\n\n\n\n09:50 – 10:10 \n\n\nIdentification\, surveillance and treatment for VHL-related pheochromocytomas and paragangliomas \n\n\nK. Pacak (US) \n\n\n\n\n10:10 – 10:30 \n\n\nProffered AbstractDistinct genomic and immune profiles of kidney cysts and clear cell renal cell carcinomas in von Hippel-Lindau syndrome \n\n\nF. Corea (IT) \n\n\n\n\n10:30 – 10:50 \n\n\nCoffee Break \n\n\n\n\n10:50 – 11:10 \n\n\nRadiation therapy in ccRCC: potential application in VHL disease \n\n\nR. van Leeuwaarde (NL) \n\n\n\n\n11:10 – 11:30 \n\n\nSystematic assessment of surgical outcomes in hereditary ccRCC \n\n\nA. Larcher (IT) \n\n\n\n\n11:30 – 11:50 \n\n\nProffered Abstract Developing Prophylactic and Therapeutic Gene Therapy for von Hippel-Lindau Syndrome Using Adeno-Associated Vectors \n\n\nP. Moeini (ES) \n\n\n\n\nSession 3 – Exploring the Molecular Basis of VHL disease – Genetics of VHL \n\n\nModerator: P. Carrera (IT) \n\n\n\n\n11:50 – 12:10 \n\n\nModeling the von Hippel Lindau disease by using hIPSC \n\n\nB. Gardie (FR) \n\n\n\n\n12:10 – 12:30 \n\n\nHypoxic stress favors somatic mutation in pre-cancer renal cells \n\n\nI. Franco (IT) \n\n\n\n\n12:30 – 12:50 \n\n\nGenetic analysis of VHL-related ccRCC \n\n\nS. Gad  Lapiteau (FR) \n\n\n\n\n12:50 – 13:10 \n\n\nProffered Abstract Oncostatin M reshapes the tumor microenvironment during ccRCC development by inducing epigenetic changes in endothelial cells \n\n\nH.H. Nguyen Tran (TW) \n\n\n\n\n13:10 – 14:20 \n\n\nLunch / Poster Session 1 \n\n \n\n\n\n  \nPosters will not be discussed\, but they will be displayed and accessible during the lunch session and will cover the following topics: VHL genetics\, Molecular basis of VHL disease\, Clinical management of VHL-related tumours – surveillance\, diagnosis and treatment\,  Systemic agents that can be exploited in VHL\, Patients’ associations \n  \nPOSTERS LIST AND AUTHORS: \n1. Genetic deletion of the primary cilium promotes malignant cyst formation and induces masculine ccRCC phenotypes in \nfemale mice – M. Adlesic (DE) \n2. Somatostatin receptor 2A expression in von Hippel‐Lindau related hemangioblastomas – S. Ahmad (NL) \n3. Structural Characterization of Hypoxia Inducible Factor α – Prolyl Hydroxylases Interaction through MD Simulation – G. \nCamagni (IT) \n4. Rassf1a mutation causes accumulation of chromosomal instability and induces gene expression changes characteristic of \nccRCC – A. Catalano (DE) \n5. The von Hippel-Lindau protein regulates androgen receptor in renal cancer – A. Falconieri (IT) \n6. Rsume Expression as A Prognostic Indicator in Clear Cell Renal Cell: Carcinoma Involvement of Cilia and Ros Pathways – D. \nGonilski (AR) \n7. In silico unveiling the Androgen Receptor’s hidden role in Clear cell renal cell carcinoma (ccRCC) through Interaction with \nthe von Hippel-Lindau Protein – F. Gregoris (IT) \n8. Exploration of the MyVHL Natural Patient History Study: Patient Demographics\, Cancer and Tumor Prevalence\, and \nImpact of Smoking on Health Outcomes in Von Hippel Lindau Disease – R. Klein (US) \n9. VHL inactivation and tyrosine kinase inhibitors prevent PD-L1 degradation – X. Liu (US) \n10. Distinctive communication between lipid-laden TAMs and VHL-deficient renal tubule cells contributes to lipid \naccumulation in tumor cells and ccRCC development – N. Nguyen Thi (TW) \n11. Patient-Specific Simulation of Retinal Hemangioblastoma Informed with Optical Coherence Tomography – F. Pradelli (IT) \n12. Synthetic lethality of VHL deficiency with CDK inhibition – O. Razorenova (CA) \n13. SETD2 regulates cytoskeleton function in ccRCC – R. Roffo (DE) \n14. Hemangioblastomatosis Associated With Von Hippel Lindau Syndrome: Case Series – L. Sussmann (CO) \n15. Epidemiology of von Hippel-Lindau Disease in Japan: A Nationwide Population-based Cohort Study – A. Takahashi (JP) \n16. Contribution of NGS multi-gene panel testing to the genetic diagnosis of renal cell carcinoma patients – R. Vibert (FR) \n17. Investigating the role of PBRM1 in a murine cancer model for ccRCC – C. Witt (DE) \n18. Investigating the Role of Oncometabolites in von Hippel Lindau disease-related Pancreatic Neuroendocrine Cancer – Y. \nYossef (IL) \n19. 810 nm infrared transpupillary thermotherapy for treatment the juxtapapillary retinal capillary hemangioblastoma. Case \nreport – T. Zakaraiia (RU) \n20. VHL Cerebellar Hemangioblastoma Origin: Postnatal Developmentally Arrested Basket/Stellate Cells of \nPurkinje/Molecular Layers in Humans – S. Shively (US) \n  \n21. Functional study of VHL in the initiation of renal carcinogenesis – V. Poillerat (FR) \n22. Hypoxic stress favours somatic mutation in normal kidneys – J.P. Margaria (IT) \n\n\n\n\nSession 4 – Exploring the Molecular Basis of VHL disease – Tumor heterogeneity in VHL ccRCC \n\n\nModerators: R. Bernardi (IT)  Ian Frew (DE) \n\n\n\n\n14:20 – 14:40 \n\n\nInfluence of the tumour microenvironment and somatic mutations on tumour growth \n\n\nT.J. Mitchell (UK) \n\n\n\n\n14:40 – 15:00 \n\n\nDistinct transcriptomic and genomic profiles of kidney cysts and clear cell renal cell carcinomas in Von Hippel-Lindau disease \n\n\nI. Rowe (IT) \n\n\n\n\n15:00 – 15:20 \n\n\nVHL disease: repeated clonal evolution in a lifetime \n\n\nS. Turajilic (UK) \n\n\n\n\n15:20 – 15:40 \n\n\nProffered AbstractKdm5c mutation cooperates with Vhl and Pbrm1 mutations to induce ccRCC in mice \n\n\nF. Cuomo (DE) \n\n\n\n\n15:40 – 16:00 \n\n\nCoffee Break \n\n\n\n\nSession 5 – Clinical management of VHL tumors – Live Tumor Board \n\n\nModerators:  \nF. De Cobelli (IT)\,  \nO. Iliopoulos (US)\,  \nE. Jonasch (US)\,  \nS. Mukai (US)\,  \nA. Tirosh (IL) \n\n\n\n\n16:00 – 16:30 \n\n\nCase Presentation of VHL Disease 1The first clinical case is about a 29 year-old woman who was enrolled in the HSR VHL Program in 2022. At admission\, she presented with significant urologic manifestations of the disease\, characterised by multiple solid lesions in both kidneys. After multidisciplinary team discussion\, the patient was selected for open bilateral tumorectomy with intraoperative thermoablation of the renal tumours.  \n\n\nL. Salerno (IT) \n\n\n\n\n16:30 – 17:00 \n\n\nCase Presentation of VHL Disease 2The second clinical case is about a 52 year-old man presenting with a metastatic kidney cancer associated with VHL disease. He has undergone multiple surgeries\, including bilateral radical nephrectomy\, and he is now under regular dialysis. Initially\, he began systemic therapy\, which was discontinued due to significant side effects. Recently\, he received radiotherapy for retroperitoneal lymphadenopathy\, a manifestation of the disease.  \n\n\nS. Ahmad  (NL) \n\n\n\n\n17:00 – 17:10 \n\n\nClosing Remarks \n\n\nR. Dere (US) \nO. Iliopoulos (US)\,  \nA. Larcher (IT)\,  \nA. Salonia (IT) \n\n\n\n \n \n \n\n\n\n\n\n\n\nSunday\, 20th October 2024 \n*Please note that each 20 minute time block will be divided into 15 minutes of presentation time and 5 minutes for Q&A \n\n\n\n\n08:25 – 08:30 \n\n\nWelcome and Introduction \n\n\nR. Dere (US) \nO. Iliopoulos (US)\,  \nA. Larcher (IT)\,  \nA. Salonia (IT) \n\n\n\n\nSession 1 – Special Lecture \n\n\n\n\n08:30 – 09:10 \n\n\nVHL 1984-2024: Evolution of Diagnosis\, Management\, Surgery and Therapy  \n\n\nM. Linehan (US) \n\n\n\n\nSession 2 – Clinical management of VHL tumors – Systemic Agents for VHL \n\n\nModerators:  \nO. Iliopoulos (US)\,  \nA. Necchi (IT) \n\n\n\n\n09:10 -09:30 \n\n\nMid-term outcomes following HIF inhibition in VHL disease \n\n\nE. Jonasch (US) \n\n\n\n\n09:30 – 09:50 \n\n\nQuality of life and toxicity under HIF inhibitors in hereditary and sporadic ccRCC \n\n\nR. Srinivasan (US) \n\n\n\n\n09:50 – 10:10 \n\n\nImpact of HIF-2a Inhibition on CNS tumors \n\n\nO. Iliopoulos (US) \n\n\n\n\n10:10 – 10:30 \n\n\nCoffee Break \n\n\n\n\nSession 3 – Signal Transduction and Modeling in VHL Disease \n\n\nModerators:  \nA. Boletta (IT)\,  \nR. Srinivasan (US) \n\n\n\n\n10:30 – 10:50 \n\n\nStudy New VHL Signaling Axis in Kidney Cancer \n\n\nQ. Zhang (US) \n\n\n\n\n10:50 – 11:10 \n\n\nLinking VHL and SETD2 in a Common Oncogenic Pathway Converging at the Mitotic Spindle. \n\n\nR. Dere (US) \n\n\n\n\n11:10 – 11:30 \n\n\nTranscriptional Control of Renal Carcinogenesis \n\n\nS. Vanharanta (FI) \n\n\n\n\n11:30 – 11:50 \n\n\nCross Species Functionalization Of The Cancer Genome \n\n\nG. Genovese (US) \n\n\n\n\n11:50 – 12:10 \n\n\nSex-specific differences in ccRCC: separating the functions of KDM5C and KDM5D \n\n\nI. Frew (DE) \n\n\n\n\n12:10 – 12:30 \n\n\nProffered Abstract Synthetic essentiality of TRAIL/TNFSF10 in VHL-deficient renal cell carcinoma \n\n\nX. Lu (US) \n\n\n\n\n12:30 – 13:50 \n\n\nLunch / Poster Session 2 \n\n\n\n\n  \nPosters will not be discussed\, but they will be displayed and accessible during the lunch session and will cover the following topics: VHL genetics\, Molecular basis of VHL disease\, Clinical management of VHL-related tumours – surveillance\, diagnosis and treatment\,  Systemic agents that can be exploited in VHL\, Patients’ associations \n  \nPOSTERS LIST AND AUTHORS: \n1. Genetic deletion of the primary cilium promotes malignant cyst formation and induces masculine ccRCC phenotypes in \nfemale mice – M. Adlesic (DE) \n2. Somatostatin receptor 2A expression in von Hippel‐Lindau related hemangioblastomas – S. Ahmad (NL) \n3. Structural Characterization of Hypoxia Inducible Factor α – Prolyl Hydroxylases Interaction through MD Simulation – G. \nCamagni (IT) \n4. Rassf1a mutation causes accumulation of chromosomal instability and induces gene expression changes characteristic of \nccRCC – A. Catalano (DE) \n5. The von Hippel-Lindau protein regulates androgen receptor in renal cancer – A. Falconieri (IT) \n6. Rsume Expression as A Prognostic Indicator in Clear Cell Renal Cell: Carcinoma Involvement of Cilia and Ros Pathways – D. \nGonilski (AR) \n7. In silico unveiling the Androgen Receptor’s hidden role in Clear cell renal cell carcinoma (ccRCC) through Interaction with \nthe von Hippel-Lindau Protein – F. Gregoris (IT) \n8. Exploration of the MyVHL Natural Patient History Study: Patient Demographics\, Cancer and Tumor Prevalence\, and \nImpact of Smoking on Health Outcomes in Von Hippel Lindau Disease – R. Klein (US) \n9. VHL inactivation and tyrosine kinase inhibitors prevent PD-L1 degradation – X. Liu (US) \n10. Distinctive communication between lipid-laden TAMs and VHL-deficient renal tubule cells contributes to lipid \naccumulation in tumor cells and ccRCC development – N. Nguyen Thi (TW) \n11. Patient-Specific Simulation of Retinal Hemangioblastoma Informed with Optical Coherence Tomography – F. Pradelli (IT) \n12. Synthetic lethality of VHL deficiency with CDK inhibition – O. Razorenova (CA) \n13. SETD2 regulates cytoskeleton function in ccRCC – R. Roffo (DE) \n14. Hemangioblastomatosis Associated With Von Hippel Lindau Syndrome: Case Series – L. Sussmann (CO) \n15. Epidemiology of von Hippel-Lindau Disease in Japan: A Nationwide Population-based Cohort Study – A. Takahashi (JP) \n16. Contribution of NGS multi-gene panel testing to the genetic diagnosis of renal cell carcinoma patients – R. Vibert (FR) \n17. Investigating the role of PBRM1 in a murine cancer model for ccRCC – C. Witt (DE) \n18. Investigating the Role of Oncometabolites in von Hippel Lindau disease-related Pancreatic Neuroendocrine Cancer – Y. \nYossef (IL) \n19. 810 nm infrared transpupillary thermotherapy for treatment the juxtapapillary retinal capillary hemangioblastoma. Case \nreport – T. Zakaraiia (RU) \n20. VHL Cerebellar Hemangioblastoma Origin: Postnatal Developmentally Arrested Basket/Stellate Cells of \nPurkinje/Molecular Layers in Humans – S. Shively (US) \n21. Functional study of VHL in the initiation of renal carcinogenesis – V. Poillerat (FR) \n22. Hypoxic stress favours somatic mutation in normal kidneys – J.P. Margaria (IT) \n\n\n\n\nSession 4 – Clinical management of VHL tumors – Extrarenal Primaries \n\n\nModerators:  \nA. M. Ferrara (IT)\,  \nS.Partelli (IT)\,  \nA. Tirosh (IL) \n\n\n\n\n13:50 – 14:10 \n\n\nMinimally invasive treatment of retinal hemangioblastoma \n\n\nS. Mukai (US) \n\n\n\n\n14:10 – 14:30 \n\n\nCNS Hemangioblastomas – the role of surgery in the modern era \n\n\nP. Chittiboina (US) \n\n\n\n\n14:30 – 14:50 \n\n\nCNS hemangioblastoma – the reasons for surgery upfront \n\n\nA Feletti (IT) \n\n\n\n\n14:50 – 15:10 \n\n\nOptimizing surgical outcomes for hereditary pancreatic NET \n\n\nN. Nilubol (US) \n\n\n\n\n15:10 – 15:30 \n\n\nProffered AbstractGermline VHL-gene alterations are associated with increased risk of cardiovascular disease – al large population study \n\n\nR. Halperin (IL) \n\n\n\n\n15:30 – 15:50 \n\n\nCoffee Break \n\n\n\n\nSession 5 – Patient associations and policymaking \n\n\nModerators: \nR. Giles (NL)\,  \nF. Lombardi (IT)\,  \nJ. Mann (US) \n\n\n\n\n15:50 – 16:10 \n\n\nAddressing the Psychosocial Needs of Individuals living with VHL \n\n\nG. Perez (US) \n\n\n\n\n16:10 – 16:30 \n\n\nCurrent unmet need of European VHL Families \n\n\nR. Giles (NL) \n\n\n\n\n16:30 – 16:45 \n\n\nState of VHLA \n\n\nJ. Thompson (US) \n\n\n\n\n16:45 – 17:00 \n\n\nClosing Remarks \n\n\nR. Dere (US) \nO. Iliopoulos (US)\,  \nA. Larcher (IT)\,  \nA. Salonia (IT) \n\n\n\n\nMeet some of the 2024 speakers\n \nMarston Linehan\, MD \nDr. Linehan pioneered the study of the genetic basis of kidney cancer. His team identified the genes for the common forms of kidney cancer and described the pathways of these kidney cancer genes. His recent studies targeting the metabolic basis of kidney cancer have resulted in the regression of metastatic cancer in patients with type 1 and type 2 papillary kidney cancer. As Chief\, Dr. Linehan oversees the Branch’s clinical/translational research program\, which emphasizes new approaches to the therapies of genitourinary cancers\, diagnostic and prognostic evaluation of solid GU tumors\, and the development of innovative surgical and adjunctive approaches to the treatment of patients with primary and metastatic urologic cancer. \n  \n \nEric Jonasch\, MDEric Jonasch\, MD is Professor in the Department of Genitourinary Medical Oncology\, Division of Cancer Center at the University of Texas M. D. Anderson Cancer Center in Houston\, Texas. \n  \nDr. Jonasch is director of the VHL Clinical Center at the MD Anderson Cancer Center and is involved in tissue-based translational research in renal cell carcinoma and VHL disease. He leads the Department of Defense Kidney Cancer and VHL Disease Consortia. Dr. Jonasch is in charge on an ongoing laboratory research effort evaluating the determinants of response and resistance to therapy in renal cell carcinoma and VHL disease. Dr. Jonasch’s current work focuses on understanding the drivers of renal cell carcinoma tumor ontogeny\, and the development of informative models of tumor-microenvironmental interaction. Dr. Jonasch serves as Vice-Chair of the NCCN Kidney Cancer Guideline Panel and is a Board member of the International Kidney Cancer Coalition. \n \nOthon Iliopoulos\, MD\, PhD \nOthon Iliopoulos is an oncologist at Massachusetts General Hospital\, where he serves as the Clinical Director of the VHL Disease/Familial Renal Cell Cancer Program. He is also an Associate Professor of Medicine at Harvard Medical School and at the Center for Cancer Research at MGH. Dr. Iliopoulos is a VHL Alliance Research Grant Recipient and is a Clinical Investigator for the MK-6482 (formerly PT-2977) clinical trial. His lab is involved in research pertaining to the main mechanisms underlying the reprogramming of cancer cell metabolism and cancer angiogenesis with the goal to develop mechanism-based strategies for selectively killing cancer cells. Dr. Iliopoulos is the Chair of the Clinical Advisory Council and the Research Council. \n  \n \nJames Brugarolas\, M.D.\, Ph.D. \nJames Brugarolas\, M.D.\, Ph.D.\, is a practicing oncologist and a tenured Professor of Internal Medicine at UT Southwestern Medical Center (UTSW). He is the Sherry Wigley Crow Endowed Chair in Cancer Research and the Founding Director of the Kidney Cancer Program\, one of two recognized by the NCI with a SPORE award. Spanning the spectrum from fundamental to clinical research\, discoveries from his laboratory identified kidney cancer driver genes\, set the foundation for the first genetic classification of the most common type (ccRCC)\, led to the first mouse models reproducing ccRCC\, and identified the first core dependency. His team is credited with advancing a first-in-class HIF-2 inhibitor developed at UTSW by validating HIF-2 as a target in kidney cancer and through the identification of putative biomarkers and mechanisms of resistance. A member of ASCI and the NCI Renal Cancer Task Force\, Dr. Brugarolas serves as chair of the scientific advisory board of the Academy of Kidney Cancer Investigators. Following a residency in internal medicine at Duke University Medical Center\, he completed a fellowship in oncology at the Dana-Farber Cancer Institute\, where he trained with Nobel Laureate William G. Kaelin\, Jr\, M.D. He holds an M.D. from the University of Navarra and a Ph.D. from MIT\, where he trained with Tyler Jacks\, Ph.D. \n \nRamaprasad Srinivasan\, M.D.\, Ph.D. \nDr. Srinivasan is developing precision\, targeted treatment strategies and clinical trials for patients with both hereditary and non-hereditary forms of kidney cancer. Currently\, he is investigating a variety of mechanism-based treatment strategies in clear cell and papillary kidney cancer\, as well as hereditary kidney cancer syndromes such as von Hippel-Lindau\, hereditary leiomyomatosis and renal cell cancer (HLRCC) and hereditary papillary renal cell cancer (HPRC). \n  \n \nKarel Pacak\, MD\, PhD\, DSc \nDr. Karel Pacak graduated summa cum laude from Charles University\, Prague\, Czech Republic in 1984. In 1990 he began his postdoctoral fellowship at NINDS Under Drs. Kopin and Goldstein. Then in 1995 Dr. Pacak began his residency in internal medicine at the Washington Hospital Center under Dr. L. Wartofsky\, followed by a fellowship in endocrinology\, diabetes\, and metabolism at NIH. He was Board certified in 1998 and 1999 in those disciplines. In 1998 he established a new Program for Neuroendocrine Tumors focusing on pheochromocytoma and paraganglioma at NICHD. He received his Ph.D. in1993 and his D.Sc. in 1998 in the field of neuroendocrinology from Charles University. In 2006 he was awarded a lifetime professorship in Internal Medicine at Charles University. Dr. Pacak is an internationally recognized expert in the diagnosis and treatment of neuroendocrine tumors\, especially pheochromocytoma and paraganglioma. Dr. Pacak also established the International Symposia on Pheochromocytoma. He also helped co-found a new Asian Alliance for the Study of Neuroendocrine Tumors in 2010. He is a recipient of numerous awards including the Peter Heimann Memorial Award at Yale University\, International Association of Endocrine Surgeons; NIH Director’s Mentoring Award\, Award for Cure from Pheo & Para Alliance\, NICHD Director’s Award of Merit\, Pincus Taft Memorial Lecture the Highest Award from Endocrine Society of Australia\, Jessenius Gold Medal from Slovak Academy of Sciences\, Outstanding Clinical Endocrinologist from the American Association of Clinical Endocrinologists and recently Outstanding Clinical Investigator (to be given in 2022) from the US Endocrine Society as well as Team Science Award from American Association for Cancer Research. Dr. Pacak is the author of more than 720 scientific peer-reviewed articles\, 150 book chapters\, and 6 books. \n  \nMILANOMilan is a vibrant and exciting city that offers a wealth of experiences for everyone. It is home to some of the most renowned museums and galleries in the world\, including the Last Supper Fresco\, the Pinacoteca di Brera and the Leonardo da Vinci Museum\, but also of iconic landmarks such as the Gothic-style Duomo di Milano and the imposing Sforza Castle. Milan is not only the capital of Italian fashion but also a foodie’s paradise\, offering a diverse range of culinary experiences that showcase the best of Italian cuisine. Visitors can enjoy everything from traditional street food to Michelin-starred fine dining. No matter the day or the time\, Milano is alive: music festivals\, art exhibitions\, theatrical performances and muchmore are there to entertain any kind of guest. \n  \nCONGRESS VENUECongress Centre HSRVia Olgettina 58/60 – MilanoBuilding Dibit 1 \n  \nThe San Raffaele Research Hospital is a highly specialized multi-disciplinary medical center of world importance\, which embodies the integrity of the treatment\, clinical research and teaching activities. San Raffaele provides treatment in all existing medical fields\, which allows this center to take care of the most complex patient cases. The Hospital is recognized as IRCCS (Scientific Institute for Research and Healthcare) for its research in molecular medicine and innovative treatments application\, such as the gene therapy. \nThe hospital is a multi-specialty center with more than 50 clinical specialties available and with over 1600 beds; it is accredited by the Italian National Health System to provide care to both public and private\, Italian and international patients.  \n  \nIn 2018 the San Raffaele Hospital performed over 51\,000 patient admissions\, 72\,000 emergency room encounters and delivered over 1.5 million outpatient medical services. It is widely regarded as the most celebrated hospital in the country and among the most reputable medical centers in Europe. San Raffaele’s wards and operating theatres are equipped with the most advanced machines\, such as PET\, PET/CT\, Gamma Knife\, Cyber Knife\, Rapid Arc\, Tomotherapy. San Raffaele’s Radiotherapy Unit was the first place in Europe to install Tomotherapy in 2004. Nowadays this Unit confirms to be one of the most experienced worldwide; it has developed numerous protocols for cancer treatment of the prostate\, breast\, central nervous system\, brain\, liver\, pancreas\, gastrointestinal tract\, lungs\, and others. The Oncological Board of the Hospital consisting of diagnosticians\, clinical oncologists\, immunologists\, surgeons and radiotherapists\, hold weekly meetings to discuss oncological patients’ pathways in a multidisciplinary manner. \nBeside its Cancer Center\, San Raffaele is well-known for its medical know-how in cardiology and cardiac surgery\, neurology and neurosurgery\, gastroenterology and gastrointestinal tract surgery\, liver surgery\, pancreas surgery\, transplant medicine\, gynecology and obstetrics\, urology\, dermatology\, ophthalmology\, immunology\, rheumatology and pediatrics. \nSan Raffaele is a pioneer in the field of gene medicine and treatment of rare immunologic and genetic diseases. San Raffaele Scientific Institute is where the first in the world gene therapy with stem cells was created\, named Strimvelis\, for patients affected by ADA-SCID syndrome. \n  \nThe Research at the San Raffaele Hospital focuses on integrating basic\, translational and clinical research to provide the most advanced care to the patients. It counts on over 1\,500 scientists\, working in state-of-the-art facilities covering a surface of 130\,000 square meters\, and have produced over 1\,446 scientific publications in 2018. \nResearch at San Raffaele aims at understanding the mechanisms underlying a variety of important human diseases and at identifying new targets and new therapeutic strategies to treat them. \n  \nThe San Raffaele Hospital hosts the Università Vita-Salute San Raffaele\, a fully private university with a complete Medical School (including specialty courses and residencies)\, Nursing School\, a Psychology graduate and post-graduate programs\, and Allied Health Professions School. The mission of the Vita-Salute \nSan Raffaele University is to answer the question “Quid est homo?” in the belief that the human being is a biological\, psychological and spiritual unicum. Since 2010 the San Raffaele Hospital also hosts the International MD Program\, the only graduate program accredited to license Medical Doctors in both Europe and North America. \n  \nAccessibilityMetro 2 (Green LINE) from city centre to Cascina Gobba stopFrom Cascina Gobba there is a private train line that will bring to HSR in 5 minutes \n  \n  \nVISA REQUIREMENTSDepending on your citizenship\, you may need to obtain a VISA before coming to Italy. For detailed information\, visit the website of the Italian Ministry of Foreign Affairs: http://vistoperitalia.esteri.it/home/enIt is the delegate’s responsibility to investigate the VISA requirements for Italy and to apply for a VISA\, if necessary. \n  \nThe conference organizers and/or the Organizing Secretariat will not directly contact embassies and consulates on behalf of VISA applicants. \n  \nVisas should be requested at least 2 months before departure\, you can apply also later but it is not sure it will be released on time\, as the application process can take several weeks. \n  \nSpecial information and questions for VISA can be requested to the Congress Secretariat at the e-mail address: visa@aimgroup.eu. \n  \nINVITATION LETTERThe invitation letter to the conference can be requested to the Congress Secretariat after the registration is paid and accepted. \n  \nPlease contact us at: VHL2024@aimgroup.eu Please note that the standard invitation letter of the conference may NOT be suitable for VISA application of those countries with special dedicated procedures. \nPlease check your status and action requested to you as explained in the Visa Information Area. \n  \nSUGGESTED ACCOMMODATIONHotel Rafael ***Via Olgettina\, 60 – 20132 MilanoEmail: info@rafaelhotel.ithttps://www.rafaelhotel.it/ Located near the Conference venue \nHotel NH Milano 2 ****Strada di Olgia Nuova – 20090 Segrate MilanoEmail: nhmilano2@nh-hotels.comWebsite \n15/20 min walking distance from the venue \n  \nHOW TO REACH MILAN RAILWAY STATION \nStazione CentraleIt is the second largest and second busiest station in Italy\, located 3 km away from the Duomo and is connected by 2 metro lines (M3 yellow and M2 green). The imposing and majestic railway station is a crucial hub for the city’s services and shopping district and the main departure point for the High-Speed train and rail connectionswith the rest of Europe. \n  \nMALPENSA AIRPORTThe most important intercontinental hub in Southern Europe\, located just at about 50 km from Milan city center and quickly reachable by car\, train (high-speed Malpensa Express train)\, bus or taxi.Malpensa airport is in a strategic position in the financial and productive heart of Europe. It is located just over 50 kilometres from Milan and is quickly reachable by car\, train\, bus or taxi. It is one of the most important airports in Europe\, offering more than 2\,500 direct flights each week and numerous intercontinental and long-haul destinations. It is also the leading Italian airport in terms of freight transport. \n  \nFROM/TO MALPENSA AIRPORTMalpensa Express Train: the airport can be easily reached from the center of Milan with the Malpensa Express train from Milan Cadorna\, Milan Centrale\, and Milan Porta Garibaldi stations. Malpensa Express train stops at Malpensa Terminals 1 and 2. Trains scheduled every 30 minutes. Travel Time: Cadorna (43 minutes) – CentralStation (53 min) – Porta Garibaldi (41 minutes) \nBy Coach: bus connections between Milan Central Station and the two terminals of Malpensa Airport areoperated by three bus lines: Terravision\, Malpensa Bus Express (Autostradale) and Malpensa Shuttle (AirPullman). Average travel time: 45 minutes \nBy car: Milan Malpensa airport is easily reachable by car using the A8 / A9 motorway if you are coming fromMilan or located to the North and East of the airport\, the A4 motorway if you are coming from the West or theSouth. \nBy taxi: various radiotaxi services are available at both Milan Malpensa Airport Terminals. The taxi ranks arelocated at the ARRIVALS\, at the ground floor\, at gate 6 of Terminal 1 and at gate 4 at Terminal 2. Fixed taxi farefrom/to Malpensa to/from Milan: 110 € \n  \nLINATE AIRPORTThe city airport is located 7 km from downtown and quickly reachable by car\, metro\, bus or taxi.Milan Linate Airport is the second-largest airport serving the city and is an inner-city airport\, located just 7 km from central Milan. \n  \nFROM/TO LINATE AIRPORTBy Metro: the M4 blue line connects Linate airport to the city center. \nBy Train: it is possible to reach Milan Linate airport by train arriving at the Milan Forlanini station\, directly connected to the airport through the urban bus line 73 (7 stops for a journey of about 10 minutes). \nBy Coach: the bus connections between the city of Milan and the neighboring municipalities and Linate Airport are operated by various bus lines: ATM\, Airbus\, Starfly\, Autoguidovie\, and Air Pullman. Travel time: to/fromMilan City Centre (Duomo): 60 minutes – to/from Milan Central Station: 25 minutes \nBy Car: Milan Linate airport can be easily reached by car from the North (A4/A51)\, from the West (VialeForlanini) and from the East (A35-Brebemi) via the Rivoltana provincial road. \nBy Taxi: several radiotaxi services are available at Milan Linate. The taxi ranks are located at the ARRIVALS\, at the ground floor. \n  \nMILAN BERGAMO AIRPORT (ORIO AL SERIO)Low-cost companies’ airport located at 45 km north-east of Milan and easy reachable by car (A4)\, by bus or taxi. \n  \nMilan Bergamo Airport is the third busiest international airport in Italy. The airport is 45 km north-east of Milan and is mainly operated by low cost companies. \n  \nFROM/TO MILAN BERGAMO AIRPORTBy Train: you can arrive by train to Bergamo train station and use the convenient bus service ATB which in just10 minutes will bring you to Milan Bergamo airport (departures every 15 minutes). \nBy Coach: the bus connections to the centre of Milan are operated by different bus companies: Terravision\,Autostradale\, Orio Shuttle\, Flixbus. Travel time to Milan Central Station: 50 minutes. \nBy car: for those coming on the A4 from Milan it is recommended to exit at Bergamo and follow for Milan Bergamo Airport. For those coming on the A4 from Brescia\, the recommended exit is Seriate. \nTaxi: at the arrivals exit you will find the taxi zone (110/130 €). URL:https://vhl.org/vhla-event/16th-international-vhl-medical-symposium-milan-italy/ CATEGORIES:In Person Event ATTACH;FMTTYPE=image/jpeg:https://vhl.org/wp-content/uploads/2024/03/may-2.jpg END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20241009T193000 DTEND;TZID=America/New_York:20241009T203000 DTSTAMP:20260405T182450 CREATED:20240605T173547Z LAST-MODIFIED:20240605T173547Z UID:10000088-1728502200-1728505800@vhl.org SUMMARY:October Low/No Vision Call DESCRIPTION:Second Wednesday of every month. \n  \nLiving with low or no vision creates unique challenges for VHL patients. The Low/No Vision Monthly Discussion Call is specifically designed for support and sharing of important tips and resources. \n  \nOur call topic:\n \n“How does blindness add to mental health challenges? What practices\, courses\, books\, etc. have you found helpful” \n  \nAll are welcome to join—whether you have questions or just want to find out more. There will be time near the end of the call for an open discussion of other related topics. We look forward to another thoughtful discussion! \n  \nThis facilitated call takes place on the 2nd Wednesday of every month at 7:30 PM ET. If you would like to join the call\, please fill out the form below. \n  \nIf you would like to join the call list please click here to register. URL:https://vhl.org/vhla-event/oct-low-no-vision-call-2024/ LOCATION:Zoom / Online CATEGORIES:Low/No Vision Monthly Call ATTACH;FMTTYPE=image/jpeg:https://vhl.org/wp-content/uploads/2024/06/Oct-9-How-does-blindness-add-to-mental-health-challenges-1.jpg END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20241007T200000 DTEND;TZID=America/New_York:20241007T210000 DTSTAMP:20260405T182450 CREATED:20240605T170735Z LAST-MODIFIED:20240605T170735Z UID:10000076-1728331200-1728334800@vhl.org SUMMARY:October Patient/Caregiver Call DESCRIPTION:First Monday of every month. \n  \nAll are welcome to join—whether you have questions or just want to find out more. There will be time near the end of the call for an open discussion of other VHL-related topics. We look forward to another thoughtful discussion! \n  \nThis facilitated call takes place on the first Monday of every month at 8 PM ET. \n  \nCall topic:\nHow to increase positive emotions to lessen the intense negative ones. \n  \nIf you would like to join the call list please click here to register. \n  URL:https://vhl.org/vhla-event/oct-patient-caregiver-call-2024/ LOCATION:Zoom / Online CATEGORIES:VHL Patient/Caregiver Call ATTACH;FMTTYPE=image/jpeg:https://vhl.org/wp-content/uploads/2024/06/Oct-7th-How-to-increase-positive-emotions.jpg END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20240916T200000 DTEND;TZID=America/New_York:20240916T210000 DTSTAMP:20260405T182450 CREATED:20240605T193648Z LAST-MODIFIED:20240606T172411Z UID:10000098-1726516800-1726520400@vhl.org SUMMARY:September Parents of VHL Patients Call DESCRIPTION:Third Monday of every other month. \nPlease join us on the third Monday every other month to discuss how we can help our children thrive with VHL. \n  \nOur topic\n“Find out how what you believe about VHL and its impact on you can increase or decrease your child’s health outcomes and what you can do about it.” \n  \nAll parents of VHL patients are welcome to join—whether you have questions or just want to find out more. There will be time near the end of the call for an open discussion of other VHL-related topics. We look forward to another thoughtful discussion! \n  \nThis facilitated call takes place on the third Monday of every other month at 8 PM ET. If you would like to join the call\, please fill out the form below. \n  \nIf you would like to join the call list please click here to register. \n  URL:https://vhl.org/vhla-event/sept-parents-of-vhl-patients-call-2024/ LOCATION:Zoom / Online CATEGORIES:Parents of VHL Patients Call ATTACH;FMTTYPE=image/jpeg:https://vhl.org/wp-content/uploads/2024/06/Sept-15-how-your-beliefs-can-impact-your-childs-health-outcomes.jpg END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20240911T193000 DTEND;TZID=America/New_York:20240911T203000 DTSTAMP:20260405T182450 CREATED:20240605T173304Z LAST-MODIFIED:20240605T173304Z UID:10000087-1726083000-1726086600@vhl.org SUMMARY:September Low/No Vision Call DESCRIPTION:Second Wednesday of every month. \n  \nLiving with low or no vision creates unique challenges for VHL patients. The Low/No Vision Monthly Discussion Call is specifically designed for support and sharing of important tips and resources. \n  \nOur call topic:\n \n“How do we maintain our physical health with VHL and vision loss?” \n  \nAll are welcome to join—whether you have questions or just want to find out more. There will be time near the end of the call for an open discussion of other related topics. We look forward to another thoughtful discussion! \n  \nThis facilitated call takes place on the 2nd Wednesday of every month at 7:30 PM ET. If you would like to join the call\, please fill out the form below. \n  \nIf you would like to join the call list please click here to register. URL:https://vhl.org/vhla-event/sept-low-no-vision-call-2024/ LOCATION:Zoom / Online CATEGORIES:Low/No Vision Monthly Call ATTACH;FMTTYPE=image/jpeg:https://vhl.org/wp-content/uploads/2024/06/Sept-11-How-do-we-maintain-our-physical-health-despite-vhl-and-vision-loss.jpg END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20240909T200000 DTEND;TZID=America/New_York:20240909T210000 DTSTAMP:20260405T182450 CREATED:20240605T170630Z LAST-MODIFIED:20240605T170630Z UID:10000075-1725912000-1725915600@vhl.org SUMMARY:September Patient/Caregiver Call DESCRIPTION:First Monday of every month. \n  \nAll are welcome to join—whether you have questions or just want to find out more. There will be time near the end of the call for an open discussion of other VHL-related topics. We look forward to another thoughtful discussion! \n  \nThis facilitated call takes place on the first Monday of every month at 8 PM ET. Please note that this call has been delayed one week due to Labor Day.  \n  \nCall topic:\nIncrease your wellbeing by increasing your sense of happiness despite extremely stressful circumstances. \n  \nIf you would like to join the call list please click here to register. \n  URL:https://vhl.org/vhla-event/sept-patient-caregiver-call-2024/ LOCATION:Zoom / Online CATEGORIES:VHL Patient/Caregiver Call ATTACH;FMTTYPE=image/jpeg:https://vhl.org/wp-content/uploads/2024/06/Sept-9th-Increase-your-sense-of-happiness.jpg END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/Chicago:20240906T170000 DTEND;TZID=America/Chicago:20240908T140000 DTSTAMP:20260405T182450 CREATED:20240201T160650Z LAST-MODIFIED:20240829T211256Z UID:10000067-1725642000-1725804000@vhl.org SUMMARY:Family Weekend 2024 | Dallas\, TX DESCRIPTION:**Please note: You must register with the registration link below in order to attend!**\n  \nJoin us for VHL Alliance Family Weekend hosted at UT Southwestern in Dallas on September 6-8! \n  \nImmerse yourself in a community of strength as we come together to share our VHL experience\, build lasting connections\, and learn directly from VHL experts. \n  \n\nUT Southwestern will serve as the backdrop for a series of engaging events\, informative sessions\, and collaborative activities. Experts in VHL research and treatment will be on hand to provide valuable insights & presentations for the VHL Community. More details on the weekend agenda will be available soon!\nConnect with fellow VHL families\, forming bonds that extend beyond the weekend. Share experiences\, exchange advice\, and connect with a supportive network that understands the VHL experience.\nEngage with expert speakers\, participate in interactive workshops\, and gain a deeper understanding of the latest advancements in VHL research and treatment. This weekend aims to equip you with the tools to navigate the challenges of VHL with confidence.\nBeyond the informative sessions\, indulge in family-friendly activities & entertainment in Dallas. We’ll share more details about additional activities soon!\nSecure your spot today for the VHL Alliance Family Weekend at UT Southwestern for $50 today. \n\n  \nWe have secured a block of rooms at a discounted rate at the Canopy Dallas Uptown. Click here to contact the hotel to secure the discounted rate – Rooms are limited\, so we’d recommend reserving your place soon! \n  \n*Event registration fee waivers are available for those who quality. Email us at info@vhl.org to learn more.  \n**Please note that every person who plans to attend Family Weekend must register individually! \n \n Register Now\n \n \n Previous\n Next URL:https://vhl.org/vhla-event/family-weekend-2024/ LOCATION:UT Southwestern\, 5201 Harry Hines Blvd\, Dallas\, TX\, 75235\, United States CATEGORIES:In Person Event ATTACH;FMTTYPE=image/jpeg:https://vhl.org/wp-content/uploads/2024/02/Family-Weekend-Promo-1-1.jpg ORGANIZER;CN="VHL Alliance":MAILTO:info@vhl.org END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20240814T193000 DTEND;TZID=America/New_York:20240814T203000 DTSTAMP:20260405T182450 CREATED:20240605T173101Z LAST-MODIFIED:20240605T173117Z UID:10000086-1723663800-1723667400@vhl.org SUMMARY:August Low/No Vision Call DESCRIPTION:Second Wednesday of every month. \n  \nLiving with low or no vision creates unique challenges for VHL patients. The Low/No Vision Monthly Discussion Call is specifically designed for support and sharing of important tips and resources. \n  \nOur call topic:\n \n“What is the Best Advice about VHL or Vision Loss That You Have Given or Received?” \n  \nAll are welcome to join—whether you have questions or just want to find out more. There will be time near the end of the call for an open discussion of other related topics. We look forward to another thoughtful discussion! \n  \nThis facilitated call takes place on the 2nd Wednesday of every month at 7:30 PM ET. If you would like to join the call\, please fill out the form below. \n  \nIf you would like to join the call list please click here to register. URL:https://vhl.org/vhla-event/aug-low-no-vision-call-2024/ LOCATION:Zoom / Online CATEGORIES:Low/No Vision Monthly Call ATTACH;FMTTYPE=image/jpeg:https://vhl.org/wp-content/uploads/2024/06/Aug-14-What-is-the-best-advice-about-vhl-or-vision-loss-that-you-have-received.jpg END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20240805T200000 DTEND;TZID=America/New_York:20240805T210000 DTSTAMP:20260405T182450 CREATED:20240605T170421Z LAST-MODIFIED:20240605T170421Z UID:10000074-1722888000-1722891600@vhl.org SUMMARY:August Patient/Caregiver Call DESCRIPTION:First Monday of every month. \n  \nAll are welcome to join—whether you have questions or just want to find out more. There will be time near the end of the call for an open discussion of other VHL-related topics. We look forward to another thoughtful discussion! \n  \nThis facilitated call takes place on the first Monday of every month at 8 PM ET. \n  \nCall topic:\nHow to build a healthy support network so you don’t have to carry this all on your own. \n  \nIf you would like to join the call list please click here to register. \n  URL:https://vhl.org/vhla-event/aug-patient-caregiver-call-2024/ LOCATION:Zoom / Online CATEGORIES:VHL Patient/Caregiver Call ATTACH;FMTTYPE=image/jpeg:https://vhl.org/wp-content/uploads/2024/06/Aug-5th-How-to-build-a-healthy-support-network.jpg END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20240715T200000 DTEND;TZID=America/New_York:20240715T210000 DTSTAMP:20260405T182450 CREATED:20240605T193037Z LAST-MODIFIED:20240605T193523Z UID:10000097-1721073600-1721077200@vhl.org SUMMARY:July Parents of VHL Patients Call DESCRIPTION:Third Monday of every other month. \nPlease join us on the third Monday every other month to discuss how we can help our children thrive with VHL. \n  \nOur topic\n“Dealing with Uncertainty” \n  \nAll parents of VHL patients are welcome to join—whether you have questions or just want to find out more. There will be time near the end of the call for an open discussion of other VHL-related topics. We look forward to another thoughtful discussion! \n  \nThis facilitated call takes place on the third Monday of every other month at 8 PM ET. If you would like to join the call\, please fill out the form below. \n  \nIf you would like to join the call list please click here to register. \n  URL:https://vhl.org/vhla-event/july-parents-of-vhl-patients-call-2024/ LOCATION:Zoom / Online CATEGORIES:Parents of VHL Patients Call ATTACH;FMTTYPE=image/jpeg:https://vhl.org/wp-content/uploads/2024/06/July-21-Dealing-with-uncertainty.jpg END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20240710T193000 DTEND;TZID=America/New_York:20240710T203000 DTSTAMP:20260405T182450 CREATED:20240605T172129Z LAST-MODIFIED:20240605T172129Z UID:10000085-1720639800-1720643400@vhl.org SUMMARY:July Low/No Vision Call DESCRIPTION:Second Wednesday of every month. \n  \nLiving with low or no vision creates unique challenges for VHL patients. The Low/No Vision Monthly Discussion Call is specifically designed for support and sharing of important tips and resources. \n  \nOur call topic:\n \n“As a person living with blindness or low vision\, how do you perceive the world differently from sighted people? What are the drawbacks and what are the benefits of your different perceptions?” \n  \nAll are welcome to join—whether you have questions or just want to find out more. There will be time near the end of the call for an open discussion of other related topics. We look forward to another thoughtful discussion! \n  \nThis facilitated call takes place on the 2nd Wednesday of every month at 7:30 PM ET. If you would like to join the call\, please fill out the form below. \n  \nIf you would like to join the call list please click here to register. URL:https://vhl.org/vhla-event/july-low-no-vision-call-2024/ LOCATION:Zoom / Online CATEGORIES:Low/No Vision Monthly Call ATTACH;FMTTYPE=image/jpeg:https://vhl.org/wp-content/uploads/2024/06/JULY-10-How-do-you-perceive-the-world-differently-vs.-people-with-sight.jpg END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20240708T200000 DTEND;TZID=America/New_York:20240708T210000 DTSTAMP:20260405T182450 CREATED:20240605T165737Z LAST-MODIFIED:20240618T154403Z UID:10000073-1720468800-1720472400@vhl.org SUMMARY:July Patient/Caregiver Call DESCRIPTION:First Monday of every month. \n  \nAll are welcome to join—whether you have questions or just want to find out more. There will be time near the end of the call for an open discussion of other VHL-related topics. We look forward to another thoughtful discussion! \n  \nThis facilitated call takes place on the first Monday of every month at 8 PM ET. \n*This call is delayed one week to accommodate a scheduling conflict with our facilitator.  \n  \nCall topic:\nNavigating the grief that can come with having a chronic illness. \n  \nIf you would like to join the call list please click here to register. \n  URL:https://vhl.org/vhla-event/july-patient-caregiver-call-2024/ LOCATION:Zoom / Online CATEGORIES:VHL Patient/Caregiver Call ATTACH;FMTTYPE=image/jpeg:https://vhl.org/wp-content/uploads/2024/06/July-1st-Navigating-Grief-1.jpg END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20240612T193000 DTEND;TZID=America/New_York:20240612T203000 DTSTAMP:20260405T182450 CREATED:20240524T173514Z LAST-MODIFIED:20240603T153412Z UID:10000071-1718220600-1718224200@vhl.org SUMMARY:June Low/No Vision Call DESCRIPTION:Second Wednesday of every month. \n  \nLiving with low or no vision creates unique challenges for VHL patients. The Low/No Vision Monthly Discussion Call is specifically designed for support and sharing of important tips and resources. \n  \nOur call topic:\n \n“What do I wish my family and friends would understand about my need for independence?” \n  \nAll are welcome to join—whether you have questions or just want to find out more. There will be time near the end of the call for an open discussion of other related topics. We look forward to another thoughtful discussion! \n  \nThis facilitated call takes place on the 2nd Wednesday of every month at 7:30 PM ET. If you would like to join the call\, please fill out the form below. \n  \n  \n \n\n\n\n\n* indicates required\nEmail Address *\n\n\n\nFirst Name *\n\n\n\nLast Name *\n\n\n\n\nAddress \n\nAddress Line 2\n\n\nCity\n\nState/Province/Region\n\nPostal / Zip Code\n\n\nCountry\nUSAAaland IslandsAfghanistanAlbaniaAlgeriaAmerican SamoaAndorraAngolaAnguillaAntigua And BarbudaArgentinaArmeniaArubaAustraliaAustriaAzerbaijanBahamasBahrainBangladeshBarbadosBelarusBelgiumBelizeBeninBermudaBhutanBoliviaBonaire\, Saint Eustatius and SabaBosnia and HerzegovinaBotswanaBouvet IslandBrazilBrunei DarussalamBulgariaBurkina FasoBurundiCambodiaCameroonCanadaCape VerdeCayman IslandsCentral African RepublicChadChileChinaChristmas IslandColombiaComorosCongoCook IslandsCosta RicaCote D’IvoireCroatiaCubaCuracaoCyprusCzech RepublicDemocratic Republic of the CongoDenmarkDjiboutiDominicaDominican RepublicEcuadorEgyptEl SalvadorEquatorial GuineaEritreaEstoniaEthiopiaFalkland IslandsFaroe IslandsFijiFinlandFranceFrench GuianaFrench PolynesiaGabonGambiaGeorgiaGermanyGhanaGibraltarGreeceGreenlandGrenadaGuadeloupeGuamGuatemalaGuernseyGuineaGuyanaHaitiHondurasHong KongHungaryIcelandIndiaIndonesiaIranIraqIrelandIsle of ManIsraelItalyJamaicaJapanJersey (Channel Islands)JordanKazakhstanKenyaKiribatiKuwaitKyrgyzstanLao People’s Democratic RepublicLatviaLebanonLesothoLiberiaLibyaLiechtensteinLithuaniaLuxembourgMacauMacedoniaMadagascarMalawiMalaysiaMaldivesMaliMaltaMarshall IslandsMartiniqueMauritaniaMauritiusMayotteMexicoMoldova\, Republic ofMonacoMongoliaMontenegroMontserratMoroccoMozambiqueMyanmarNamibiaNepalNetherlandsNetherlands AntillesNew CaledoniaNew ZealandNicaraguaNigerNigeriaNiueNorfolk IslandNorth KoreaNorwayOmanPakistanPalauPalestinePanamaPapua New GuineaParaguayPeruPhilippinesPitcairnPolandPortugalQatarRepublic of KosovoReunionRomaniaRussiaRwandaSaint Kitts and NevisSaint LuciaSaint MartinSaint Vincent and the GrenadinesSamoa (Independent)San MarinoSao Tome and PrincipeSaudi ArabiaSenegalSerbiaSeychellesSierra LeoneSingaporeSint MaartenSlovakiaSloveniaSolomon IslandsSomaliaSouth AfricaSouth Georgia and the South Sandwich IslandsSouth KoreaSouth SudanSpainSri LankaSudanSurinameSvalbard and Jan Mayen IslandsSwazilandSwedenSwitzerlandSyriaTaiwanTajikistanTanzaniaThailandTimor-LesteTogoTongaTrinidad and TobagoTunisiaTurkeyTurkmenistanTurks & Caicos IslandsUgandaUkraineUnited Arab EmiratesUnited KingdomUruguayUzbekistanVanuatuVatican City State (Holy See)VenezuelaVietnamVirgin Islands (British)Virgin Islands (U.S.)Western SaharaYemenZambiaZimbabwe\n\nPhone Number \n\n\n\nWhat call would you like to join? \n\n\nPatient / Caregiver Call\n\nParents of VHLers Call\n\nLow / No Vision Call\n\n  URL:https://vhl.org/vhla-event/june-low-no-vision-call-24/ LOCATION:Zoom / Online CATEGORIES:Low/No Vision Monthly Call ATTACH;FMTTYPE=image/png:https://vhl.org/wp-content/uploads/2024/05/What-do-I-wish-my-family-and-friends-would-understand-about-my-need-for-independence.png END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20240603T200000 DTEND;TZID=America/New_York:20240603T210000 DTSTAMP:20260405T182450 CREATED:20240524T173909Z LAST-MODIFIED:20240524T173909Z UID:10000072-1717444800-1717448400@vhl.org SUMMARY:June Patient/Caregiver Call DESCRIPTION:First Monday of every month. \n  \nAll are welcome to join—whether you have questions or just want to find out more. There will be time near the end of the call for an open discussion of other VHL-related topics. We look forward to another thoughtful discussion! \n  \nThis facilitated call takes place on the first Monday of every month at 8 PM ET. \n  \nCall topic:\nGuilt and other tough emotions that come with VHL. \n  \nIf you would like to join the call list\, please fill out the form below. \n  \n \n\n\n\n\n* indicates required\nEmail Address *\n\n\n\nFirst Name *\n\n\n\nLast Name *\n\n\n\n\nAddress \n\nAddress Line 2\n\n\nCity\n\nState/Province/Region\n\nPostal / Zip Code\n\n\nCountry\nUSAAaland IslandsAfghanistanAlbaniaAlgeriaAmerican SamoaAndorraAngolaAnguillaAntigua And BarbudaArgentinaArmeniaArubaAustraliaAustriaAzerbaijanBahamasBahrainBangladeshBarbadosBelarusBelgiumBelizeBeninBermudaBhutanBoliviaBonaire\, Saint Eustatius and SabaBosnia and HerzegovinaBotswanaBouvet IslandBrazilBrunei DarussalamBulgariaBurkina FasoBurundiCambodiaCameroonCanadaCape VerdeCayman IslandsCentral African RepublicChadChileChinaChristmas IslandColombiaComorosCongoCook IslandsCosta RicaCote D’IvoireCroatiaCubaCuracaoCyprusCzech RepublicDemocratic Republic of the CongoDenmarkDjiboutiDominicaDominican RepublicEcuadorEgyptEl SalvadorEquatorial GuineaEritreaEstoniaEthiopiaFalkland IslandsFaroe IslandsFijiFinlandFranceFrench GuianaFrench PolynesiaGabonGambiaGeorgiaGermanyGhanaGibraltarGreeceGreenlandGrenadaGuadeloupeGuamGuatemalaGuernseyGuineaGuyanaHaitiHondurasHong KongHungaryIcelandIndiaIndonesiaIranIraqIrelandIsle of ManIsraelItalyJamaicaJapanJersey (Channel Islands)JordanKazakhstanKenyaKiribatiKuwaitKyrgyzstanLao People’s Democratic RepublicLatviaLebanonLesothoLiberiaLibyaLiechtensteinLithuaniaLuxembourgMacauMacedoniaMadagascarMalawiMalaysiaMaldivesMaliMaltaMarshall IslandsMartiniqueMauritaniaMauritiusMayotteMexicoMoldova\, Republic ofMonacoMongoliaMontenegroMontserratMoroccoMozambiqueMyanmarNamibiaNepalNetherlandsNetherlands AntillesNew CaledoniaNew ZealandNicaraguaNigerNigeriaNiueNorfolk IslandNorth KoreaNorwayOmanPakistanPalauPalestinePanamaPapua New GuineaParaguayPeruPhilippinesPitcairnPolandPortugalQatarRepublic of KosovoReunionRomaniaRussiaRwandaSaint Kitts and NevisSaint LuciaSaint MartinSaint Vincent and the GrenadinesSamoa (Independent)San MarinoSao Tome and PrincipeSaudi ArabiaSenegalSerbiaSeychellesSierra LeoneSingaporeSint MaartenSlovakiaSloveniaSolomon IslandsSomaliaSouth AfricaSouth Georgia and the South Sandwich IslandsSouth KoreaSouth SudanSpainSri LankaSudanSurinameSvalbard and Jan Mayen IslandsSwazilandSwedenSwitzerlandSyriaTaiwanTajikistanTanzaniaThailandTimor-LesteTogoTongaTrinidad and TobagoTunisiaTurkeyTurkmenistanTurks & Caicos IslandsUgandaUkraineUnited Arab EmiratesUnited KingdomUruguayUzbekistanVanuatuVatican City State (Holy See)VenezuelaVietnamVirgin Islands (British)Virgin Islands (U.S.)Western SaharaYemenZambiaZimbabwe\n\nPhone Number \n\n\n\nWhat call would you like to join? \n\n\nPatient / Caregiver Call\n\nParents of VHLers Call\n\nLow / No Vision Call\n\n  URL:https://vhl.org/vhla-event/june-patient-caregiver-call-24/ LOCATION:Zoom / Online CATEGORIES:VHL Patient/Caregiver Call ATTACH;FMTTYPE=image/png:https://vhl.org/wp-content/uploads/2024/05/guilt-and-other-tough-emotions-1.png END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20240520T200000 DTEND;TZID=America/New_York:20240520T210000 DTSTAMP:20260405T182450 CREATED:20230320T184559Z LAST-MODIFIED:20230329T171727Z UID:10000026-1716235200-1716238800@vhl.org SUMMARY:May Parents of VHL Patients Call DESCRIPTION:Third Monday of every other month. \nPlease join us on the third Monday every other month to discuss how we can help our children thrive with VHL. \n  \nOur topic\nHow to navigate the challenging emotions that come with having a child with a chronic illness (and how to know when we aren’t doing that well). \n  \nAll parents of VHLers are welcome to join—whether you have questions or just want to find out more. There will be time near the end of the call for an open discussion of other VHL-related topics. We look forward to another thoughtful discussion! \n  \nThis facilitated call takes place on the third Monday of every other month at 8 PM ET. If you would like to join the call\, please fill out the form below. \n  \n \n\n\n\n\n* indicates required\nEmail Address *\n\n\n\nFirst Name *\n\n\n\nLast Name *\n\n\n\n\nAddress \n\nAddress Line 2\n\n\nCity\n\nState/Province/Region\n\nPostal / Zip Code\n\n\nCountry\nUSAAaland IslandsAfghanistanAlbaniaAlgeriaAmerican SamoaAndorraAngolaAnguillaAntigua And BarbudaArgentinaArmeniaArubaAustraliaAustriaAzerbaijanBahamasBahrainBangladeshBarbadosBelarusBelgiumBelizeBeninBermudaBhutanBoliviaBonaire\, Saint Eustatius and SabaBosnia and HerzegovinaBotswanaBouvet IslandBrazilBrunei DarussalamBulgariaBurkina FasoBurundiCambodiaCameroonCanadaCape VerdeCayman IslandsCentral African RepublicChadChileChinaChristmas IslandColombiaComorosCongoCook IslandsCosta RicaCote D’IvoireCroatiaCubaCuracaoCyprusCzech RepublicDemocratic Republic of the CongoDenmarkDjiboutiDominicaDominican RepublicEcuadorEgyptEl SalvadorEquatorial GuineaEritreaEstoniaEthiopiaFalkland IslandsFaroe IslandsFijiFinlandFranceFrench GuianaFrench PolynesiaGabonGambiaGeorgiaGermanyGhanaGibraltarGreeceGreenlandGrenadaGuadeloupeGuamGuatemalaGuernseyGuineaGuyanaHaitiHondurasHong KongHungaryIcelandIndiaIndonesiaIranIraqIrelandIsle of ManIsraelItalyJamaicaJapanJersey (Channel Islands)JordanKazakhstanKenyaKiribatiKuwaitKyrgyzstanLao People’s Democratic RepublicLatviaLebanonLesothoLiberiaLibyaLiechtensteinLithuaniaLuxembourgMacauMacedoniaMadagascarMalawiMalaysiaMaldivesMaliMaltaMarshall IslandsMartiniqueMauritaniaMauritiusMayotteMexicoMoldova\, Republic ofMonacoMongoliaMontenegroMontserratMoroccoMozambiqueMyanmarNamibiaNepalNetherlandsNetherlands AntillesNew CaledoniaNew ZealandNicaraguaNigerNigeriaNiueNorfolk IslandNorth KoreaNorwayOmanPakistanPalauPalestinePanamaPapua New GuineaParaguayPeruPhilippinesPitcairnPolandPortugalQatarRepublic of KosovoReunionRomaniaRussiaRwandaSaint Kitts and NevisSaint LuciaSaint MartinSaint Vincent and the GrenadinesSamoa (Independent)San MarinoSao Tome and PrincipeSaudi ArabiaSenegalSerbiaSeychellesSierra LeoneSingaporeSint MaartenSlovakiaSloveniaSolomon IslandsSomaliaSouth AfricaSouth Georgia and the South Sandwich IslandsSouth KoreaSouth SudanSpainSri LankaSudanSurinameSvalbard and Jan Mayen IslandsSwazilandSwedenSwitzerlandSyriaTaiwanTajikistanTanzaniaThailandTimor-LesteTogoTongaTrinidad and TobagoTunisiaTurkeyTurkmenistanTurks & Caicos IslandsUgandaUkraineUnited Arab EmiratesUnited KingdomUruguayUzbekistanVanuatuVatican City State (Holy See)VenezuelaVietnamVirgin Islands (British)Virgin Islands (U.S.)Western SaharaYemenZambiaZimbabwe\n\nPhone Number \n\n\n\nWhat call would you like to join? \n\n\nPatient / Caregiver Call\n\nParents of VHLers Call\n\nLow / No Vision Call\n\n  URL:https://vhl.org/vhla-event/may-parents-of-vhlers-call-2024/ LOCATION:Zoom / Online CATEGORIES:Parents of VHL Patients Call ATTACH;FMTTYPE=image/jpeg:https://vhl.org/wp-content/uploads/2023/03/child-w_-chronic-illness-the-thoughts-that-come-with-that-1.jpg END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20240518T130000 DTEND;TZID=America/New_York:20240518T150000 DTSTAMP:20260405T182450 CREATED:20240221T171326Z LAST-MODIFIED:20240507T182330Z UID:10000068-1716037200-1716044400@vhl.org SUMMARY:VHL Awareness Month Walk DESCRIPTION:Be a part of VHLA history by joining walkers all over the country in the first ever VHL walk! Sign up as a team or individual walker to fundraise. Then\, on walk day\, gather with your team (and maybe even other teams in your area) to watch our kickoff video online\, then walk around your neighborhood or park at the same time as other walkers all over the country! \n  \nYou can help us raise $25\,000 to support VHL research\, innovation\, and all of the other life changing VHL Alliance programs! \n  \nWhen? Saturday\, May 18th at 1:00 p.m. EST (10:00 a.m. PT)Where? Your town! \n \n Sign Up Now!\n \n  \nPresented by:  \n \n  \nSponsored by: URL:https://vhl.org/vhla-event/vhl-awareness-month-walk/ ATTACH;FMTTYPE=image/jpeg:https://vhl.org/wp-content/uploads/2024/02/VHL-Alliance-Walk-Image-1.jpg END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20240508T193000 DTEND;TZID=America/New_York:20240508T203000 DTSTAMP:20260405T182450 CREATED:20240326T161525Z LAST-MODIFIED:20240416T133612Z UID:10000069-1715196600-1715200200@vhl.org SUMMARY:May Low/No Vision Call DESCRIPTION:Second Wednesday of every month. \n  \nLiving with low or no vision creates unique challenges for VHL patients. The Low/No Vision Monthly Discussion Call is specifically designed for support and sharing of important tips and resources. \n  \nOur call topic:\nHow is VHL affecting you physically? \n  \nAll are welcome to join—whether you have questions or just want to find out more. There will be time near the end of the call for an open discussion of other related topics. We look forward to another thoughtful discussion! \n  \nThis facilitated call takes place on the 2nd Wednesday of every month at 7:30 PM ET. If you would like to join the call\, please fill out the form below. \n  \n  \n \n\n\n\n\n* indicates required\nEmail Address *\n\n\n\nFirst Name *\n\n\n\nLast Name *\n\n\n\n\nAddress \n\nAddress Line 2\n\n\nCity\n\nState/Province/Region\n\nPostal / Zip Code\n\n\nCountry\nUSAAaland IslandsAfghanistanAlbaniaAlgeriaAmerican SamoaAndorraAngolaAnguillaAntigua And BarbudaArgentinaArmeniaArubaAustraliaAustriaAzerbaijanBahamasBahrainBangladeshBarbadosBelarusBelgiumBelizeBeninBermudaBhutanBoliviaBonaire\, Saint Eustatius and SabaBosnia and HerzegovinaBotswanaBouvet IslandBrazilBrunei DarussalamBulgariaBurkina FasoBurundiCambodiaCameroonCanadaCape VerdeCayman IslandsCentral African RepublicChadChileChinaChristmas IslandColombiaComorosCongoCook IslandsCosta RicaCote D’IvoireCroatiaCubaCuracaoCyprusCzech RepublicDemocratic Republic of the CongoDenmarkDjiboutiDominicaDominican RepublicEcuadorEgyptEl SalvadorEquatorial GuineaEritreaEstoniaEthiopiaFalkland IslandsFaroe IslandsFijiFinlandFranceFrench GuianaFrench PolynesiaGabonGambiaGeorgiaGermanyGhanaGibraltarGreeceGreenlandGrenadaGuadeloupeGuamGuatemalaGuernseyGuineaGuyanaHaitiHondurasHong KongHungaryIcelandIndiaIndonesiaIranIraqIrelandIsle of ManIsraelItalyJamaicaJapanJersey (Channel Islands)JordanKazakhstanKenyaKiribatiKuwaitKyrgyzstanLao People’s Democratic RepublicLatviaLebanonLesothoLiberiaLibyaLiechtensteinLithuaniaLuxembourgMacauMacedoniaMadagascarMalawiMalaysiaMaldivesMaliMaltaMarshall IslandsMartiniqueMauritaniaMauritiusMayotteMexicoMoldova\, Republic ofMonacoMongoliaMontenegroMontserratMoroccoMozambiqueMyanmarNamibiaNepalNetherlandsNetherlands AntillesNew CaledoniaNew ZealandNicaraguaNigerNigeriaNiueNorfolk IslandNorth KoreaNorwayOmanPakistanPalauPalestinePanamaPapua New GuineaParaguayPeruPhilippinesPitcairnPolandPortugalQatarRepublic of KosovoReunionRomaniaRussiaRwandaSaint Kitts and NevisSaint LuciaSaint MartinSaint Vincent and the GrenadinesSamoa (Independent)San MarinoSao Tome and PrincipeSaudi ArabiaSenegalSerbiaSeychellesSierra LeoneSingaporeSint MaartenSlovakiaSloveniaSolomon IslandsSomaliaSouth AfricaSouth Georgia and the South Sandwich IslandsSouth KoreaSouth SudanSpainSri LankaSudanSurinameSvalbard and Jan Mayen IslandsSwazilandSwedenSwitzerlandSyriaTaiwanTajikistanTanzaniaThailandTimor-LesteTogoTongaTrinidad and TobagoTunisiaTurkeyTurkmenistanTurks & Caicos IslandsUgandaUkraineUnited Arab EmiratesUnited KingdomUruguayUzbekistanVanuatuVatican City State (Holy See)VenezuelaVietnamVirgin Islands (British)Virgin Islands (U.S.)Western SaharaYemenZambiaZimbabwe\n\nPhone Number \n\n\n\nWhat call would you like to join? \n\n\nPatient / Caregiver Call\n\nParents of VHLers Call\n\nLow / No Vision Call\n\n  URL:https://vhl.org/vhla-event/may-low-no-vision-call-2024/ LOCATION:Zoom / Online CATEGORIES:Low/No Vision Monthly Call ATTACH;FMTTYPE=image/jpeg:https://vhl.org/wp-content/uploads/2024/03/Decision-Fatigue.jpg END:VEVENT END:VCALENDAR