Von Hippel-Lindau disease
Other Names for this Disease
- VHL syndrome
- Von Hippel-Lindau disease
- Von Hippel-Lindau syndrome
- Familial cerebelloretinal angiomatosis
On this page
- How to Get Involved in Research – A video developed by GARD Information Specialists that explains how you can find out about research for a rare disease.
- ClinicalTrials.gov lists trials that are studying or have studied Von Hippel-Lindau disease. Click on the link to go to ClinicalTrials.gov to read descriptions of these studies.
- The VHL Family Alliance has teamed up with the National Disease Research Interchange (NDRI) to create a tissue bank to help scientists find ways of improving diagnosis and treatment of Von Hippel-Lindau syndrome. To learn more about this tissue bank, click here.
- ResearchMatch is a free national research registry designed to bring together patients, healthy volunteers and researchers. Anyone from the United States can register with ResearchMatch, and a parent, legal guardian, or caretaker may register on behalf of a volunteer. Researchers from participating institutions use the ResearchMatch database to search for patients or healthy volunteers who meet the study criteria. Many studies are looking for healthy people of all ages, while some are looking for people with specific illnesses. ResearchMatch was developed by major academic institutions across the country and is funded by the National Center for Research Resources (NCRR), a center of the National Institutes of Health (NIH), the primary Federal agency for conducting and supporting medical research. Click on the link to learn more about ResearchMatch.
- The VHL Family Alliance is actively involved in research to further the understanding of Von Hippel-Lindau disease. Research efforts currently encompass the development of a Patient Registry, involvement in Clinical Trials and the creation of a VHL gene mutation database. To learn more about ongoing research efforts, click here.
- NIH Clinical Trials and You is a website developed by the National Institutes of Health (NIH) to help people learn more about clinical trials, why they matter, and how to participate.