VHL Alliance

May Patient/Caregiver Call
2023-05-01 20:00 - 21:00 (America/New_York) | Zoom / Online
First Monday of every month.

All 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!

This facilitated call takes place on the first Monday of every month at 8 PM ET.

Call topic:
How to build a healthy support network so you don’t have to carry this all on your own.

If you would like to join the call list, please fill out the form below.

* indicates required
Email Address *

First Name *

Last Name *

Address

Address Line 2

City

State/Province/Region

Postal / Zip Code

Country
USAAaland 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

Phone Number

What call would you like to join?

Patient / Caregiver Call

Parents of VHLers Call

Low / No Vision Call

Adrenal Awareness Month Webinar
2023-04-19 20:00 - 20:30
Join the American Association of Endocrine Surgeons (AAES) Adrenal Awareness Month webinar on April 19th!

This Question & Answer panel will feature subject matter experts and is open to the public. No registration required – Just visit the AAES facebook page at 8 pm EST on April 19th!

April VHL Patient/Caregiver Call
2023-04-17 20:00 - 21:00 | Zoom / Online
This call is normally the first Monday of every month – It has been delayed in April due to a scheduling conflict with our facilitator! See you on April 17th.

All 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!

This facilitated call normally takes place on the first Monday of every month at 8 PM ET – Please note the updated timing for April!

Call topic:
Continuing the discussion: Navigating the grief that can come with having a chronic illness

If you would like to join the call list, please fill out the form below.

* indicates required
Email Address *

First Name *

Last Name *

Address

Address Line 2

City

State/Province/Region

Postal / Zip Code

Country
USAAaland 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

Phone Number

What call would you like to join?

Patient / Caregiver Call

Parents of VHLers Call

Low / No Vision Call

April Low/No Vision Call
2023-04-12 19:30 - 20:30 | Zoom / Online
Second Wednesday of every month

Living 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.

Our call topic
“How do you get outside and take in the warmer days and warm weather activities?”

All 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!

This 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.

* indicates required
Email Address *

First Name *

Last Name *

Address

Address Line 2

City

State/Province/Region

Postal / Zip Code

Country
USAAaland 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

Phone Number

What call would you like to join?

Patient / Caregiver Call

Parents of VHLers Call

Low / No Vision Call

March Parents of VHL Patients Call
2023-03-20 20:00 - 21:00 | Zoom / Online
Third Monday of every other month.
Please join us on the third Monday every other month to discuss how we can help our children thrive with VHL.
All 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!
This 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.

* indicates required

Email Address *

First Name *

Last Name *

Address

Address Line 2

City

State/Province/Region

Postal / Zip Code

Country
USAAaland 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

Phone Number

What call would you like to join?

Patient / Caregiver Call

Parents of VHLers Call

Low / No Vision Call

New Patient / Caregiver Cohort Program
2023-03-16 19:00 - 20:00, 2023-03-09 19:00 - 20:00, 2023-03-02 19:00 - 20:00, 2023-02-23 19:00 - 20:30 | Zoom / Online
Recently diagnosed? Join us for our four week New Patient Cohort! This program will allow you to…

Meet other VHL patients and caregivers and developed a personal support network
Learn more about VHL disease from VHL experts
Learn about the VHL Surveillance Guidelines and why they are important
Learn about the importance of VHL-experienced clinical care and the CCC program
Learn about resilience, how to practice self-care and where to find support
Learn how to be a better self-advocate and share your story
Learn where to find available VHLA and external resources
Learn how to get involved with VHLA and contribute to the VHL community

Week 1 (February 23rd) – Welcome and What is VHL?

Welcome and introductions
VHL 101 and Research Discussion

Week 2 (March 2nd) – Self-Care, Self-Advocacy, and Support

What is self-care and why is it important?
Dealing with Stress and Anxiety
Facing adversity and fostering resilience
Being a self-advocate
“Elevator Pitch” – Communicating with those around you

Week 3 (March 9th) – VHL Veterans Panel

Panel discussion with VHL patients – “Ask the VHL Veterans”

Week 4 (March 16th) – Available Resources and Getting Involved

How to find available resources
VHLA resources
External resources
Volunteer opportunities
Upcoming Events
Feedback

Register Here

March Low/No Vision Call
2023-03-08 19:30 - 20:30 | Zoom / Online
Second Wednesday of every month
Living with low or no vision creates unique challenges for VHLers. The Low/No Vision Monthly Discussion Call is specifically designed for support and sharing of important tips and resources.
All 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!
This 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.

* indicates required
Email Address *

First Name *

Last Name *

Address

Address Line 2

City

State/Province/Region

Postal / Zip Code

Country
USAAaland 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

Phone Number

What call would you like to join?

Patient / Caregiver Call

Parents of VHLers Call

Low / No Vision Call

March VHL Patient/Caregiver Call
2023-03-06 20:00 - 21:00 | Zoom / Online
First Monday of every month.
All 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!
This facilitated call takes place on the first Monday of every month at 8 PM ET.
If you would like to join the call list, please fill out the form below.

* indicates required

Email Address *

First Name *

Last Name *

Address

Address Line 2

City

State/Province/Region

Postal / Zip Code

Country
USAAaland 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

Phone Number

What call would you like to join?

Patient / Caregiver Call

Parents of VHLers Call

Low / No Vision Call

2023 Julie Flynn HOPE Retreat for Young Adults
2023-02-24 - 2023-02-26 | Washington DC, Washington DC, DC, United States
Are you a young adult with VHL? If so, join other young adults for a weekend of fun and information! We’re excited to get together in person after our digital event last year.
Participants must cover transportation costs to and from DC. VHLA will cover the cost of lodging, meals, and activities for the weekend.
Scholarships are available for those who need assistance covering travel costs. My info coming soon.
Date: 2/24-2/26
Location: Washington, DC
Cost: $70 on or before 1/27; $100 after
Register Here

This event would not be possible without the support of our generous sponsors:

Navigating Tough Conversations Workshop
2023-02-23 13:00 - 14:30 | Zoom / Online
No one likes conflict. Having VHL can feel very stressful and that can strain relationships, erode healthy communication, and increase the likelihood of conflict.

What if you could navigate tough conversations with greater expertise or avoid having conflict?

Join this session to discover research-based tools that you can implement immediately to improve your communication skills and bring harmony to your relationships.

Click here to register

VHLentine's Day
2023-02-14 08:00 - 09:00

February Low/No Vision Monthly Call
2023-02-08 19:30 - 20:30 | Zoom / Online
Second Wednesday of every month
Living with low or no vision creates unique challenges for VHLers. The Low/No Vision Monthly Discussion Call is specifically designed for support and sharing of important tips and resources.
All 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!
This 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 email us at calls@vhl.org.

February VHL Patient/Caregiver Call
2023-02-06 20:00 - 21:00 | Zoom / Online
First Monday of every month.
All 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!
This facilitated call takes place on the first Monday of every month at 8 PM ET.
If you would like to join the call list, please send us an email at calls@vhl.org

Parents of VHL Patients Call
2023-01-23 20:00 - 21:00 | Zoom / Online
Third Monday of every other month (Delayed 1 week in Jan. due to MLK Day)
Please join us on the third Monday every other month to discuss how we can help our children thrive with VHL.
All 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!
This 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 email us at calls@vhl.org

Low/No Vision Monthly Call
2023-01-11 19:30 - 20:30 | Zoom / Online

VHL Patient/Caregiver Call
2023-01-09 20:00 - 21:00 | Zoom / Online
First Monday of every month (Delayed 1 week in Jan. due to New Years holiday)
All 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!
This facilitated call takes place on the first Monday of every month at 8 PM ET.
If you would like to join the call list, please send us an email at calls@vhl.org
