There is already an existing support community for people with VHL at http://vhl.inspire.com
We invite you to join the conversation there, where there are years of previous conversations, and nearly a thousand people to welcome you.
At http://vhl.org you will find 16 years of compiled information on VHL. We publish the latest findings in our newsletter (3-4 times a year), with updates between paper issues in our e-news electronic newsletter.
Please JOIN - become a member, help to support our existing projects, and fund research as well.
You are always welcome to phone us at 1-800-767-4VHL (800-767-4845) which is a toll-free hotline available from US, Canada, and Mexico.
Write to us at firstname.lastname@example.org
VHL Family Alliance
2001 Beacon Street, Suite 208
Boston, MA 02135