Von Hippel–Lindau diseaseQuestions to ask your doctor
A rare inherited condition that can cause tumors and cysts across several organs over a lifetime. Coordinated, lifelong surveillance and genetic counseling are the cornerstones of care.
Preview — not yet published
This page is in editorial and medical review. Content below is a scaffold — treat it as a preview, not guidance.
Practical prompts to bring to your next appointment — not a script, a starting point.
Has my VHL diagnosis been confirmed with genetic testing, and which variant was found?
Which organs need surveillance for me right now, and how often?
Who is coordinating my surveillance across specialties?
Which findings are safe to watch, and which may need treatment soon?
Are there registries, natural-history studies, or trials that fit my situation?
A note on using this list
Bring the 3–5 questions that matter most to you, not all of them. It’s also fine to take notes during the appointment, or bring someone with you who can.
Review, sources, and disclaimer
How this page was reviewed
Pending medical review. This page will list the reviewing clinician and review date before publication.
Content version 0.1
- Von Hippel-Lindau Disease (PDQ®) — Health Professional Version· government
- Von Hippel-Lindau Syndrome — GeneReviews· other
- Von Hippel-Lindau syndrome — MedlinePlus Genetics· patient education
- FDA approval of Welireg (belzutifan) for VHL-associated tumors· government
- Guidelines for surveillance of patients with Von Hippel-Lindau disease· guideline
- VHL Handbook & Resources — VHL Alliance· patient education
This page is educational, not medical advice. Talk with your care team about decisions that apply to you. If something feels urgent, contact your doctor — or, for emergencies, call your local emergency number.