Meetings
- 10/31/2009
Gainesville, FL 9:00AM ~ 1:00PM
News
vHL Connections, a 501 (c) (3) organization, was founded in 2005 by a group of dedicated volunteers who are committed to helping individuals affected by von Hippel-Lindau disease (vHL).
As an organization, our focus is on support, education, awareness, and increasing the management skills of those affected by the condition.
vHL Connections support line 1-866-INFO-vHL (463-6845) is answered by operators that have over 50 years experience with vHL. We come from large vHL families that have been dealing with vHL for several generations. We are here to answer your concerns about vHL from DNA testing to seeking the right medical professionals. Although the operators aren't medical professionals, they are well-versed in vHL and the support necessary to handle each of your concerns. Our support line is available to all, and provides a place to find a knowledgeable, caring ear just to discuss an upcoming doctor visit, test or a review of results.
vHL Connections semi annual newsletter will cover stories from the lives of other vHL connected people along with recent medical news that affect our lives.
vHL Connections support meetings will be held in several geographic locations. The goal of these meetings is to meet, share and learn more about vHL and how we can support each other as we follow our daily journey through life. Each meeting site and date will be published in our newsletter, on the web site and by direct mailing to those located in the meeting area.
Our Goals
Meet the Board of Directors