Adrenal Awareness Month Webinar

  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!

May Patient/Caregiver Call

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...

May Low/No Vision Call

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 "What do I wish my family and friends would understand about my need for independence?"...

May Parents of VHL Patients Call

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.   Our topic 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...

June Patient/Caregiver Call

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...

June Low/No Vision Call

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 "What is the Best Advice about VHL or Vision Loss That You Have Gave or...

July Patient/Caregiver Call

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...

July Low/No Vision Call

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 "What has VHL taught you?"   All are welcome to join—whether you have questions or...

July Parents of VHL Patients Call

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.   Our topic Increase your wellbeing by increasing your sense of happiness despite extremely stressful circumstances.   All parents of VHLers are welcome to join—whether you have questions...

Event Series New Patient Cohort Program

VHL 101 / Research Update Info Session

Zoom / Online

  Recently diagnosed? Join us for a VHL 101 / Research Update info session! This is a one off workshop with Othon Iliopoulos, MD!   A few reasons why you should consider joining us:   Meet other VHL patients and caregivers and developed a personal support network Learn more about VHL disease from VHL experts...

Family Weekend Fun Walk / Run

Join us in Nashville for a Family Friendly fun walk!   On Sunday morning of family weekend we will walk a one mile loop around Centennial Park to raise awareness for VHL. The walk will start at 9 am, and will conclude with a brunch for all participants!   We're encouraging walkers to:   -...