Von Hippel-Lindau disease
Other Names for this Disease
- Familial cerebelloretinal angiomatosis
- Lindau disease
- VHL syndrome
- Von Hippel-Lindau disease
On this page
- How to Find a Disease Specialist – A video developed by GARD Information Specialists that explains how you can find specialists for a rare disease.
- Many individuals want to know about healthcare professionals or researchers who have knowledge of their conditions. When a condition is rare, it can be difficult to find someone who has seen many cases. Although there is no list of experts in rare diseases, GARD's How to Find a Disease Specialist fact sheet provides several ways to identify healthcare professionals who have experience with a particular condition. Click on the link to access this resource and learn more.
- The VHL Family Alliance has created a new discussion forum. This new, more modern format allows users not only to have interactive conversations on particular topics, but to organize the conversation so that newcomers can easily get up-to-speed, and so that we can find topics that have been discussed in the past.
You may wish to discuss your concerns with a genetics professional. The following online resources can help you find a genetics professional in your community:
- The American College of Medical Genetics has a searchable database of US genetics clinics.
- The Social Security Administration (SSA) created the Compassionate Allowance Initiative to speed up the processing of disability claims for applicants with certain conditions. Click on the link to view the Compassionate Allowance information for kidney cancer, a cancer associated with this condition. More information about applying for Social Security disability benefits is available online.
- The Parent Technical Assistance Center Network provides a list of the Parent Training and Information Centers in each state. These centers are funded by the United States Department of Education to provide early intervention and special education information and training to parents of children with disabilities from birth to age 26. Click on the link to find the Parent Center in your state.