Families, Friends, Physicians and Researchers are working together to improve diagnosis, treatment and quality of life for people affected by von Hippel-Lindau Disease.
VON HIPPEL-LINDAU DISEASE is an inherited multi-system disorder characterized by abnormal growth of blood vessels. Tumours may develop in the retina, certain areas of the brain, the spinal cord, the adrenal glands and other parts of the body.
The VHL Family Alliance began as a support group in the United States in 1993 with just three members. Today that number has risen to over 2500 volunteers, physicians and scientists spanning the globe. Our Canadian affiliate became a charitable organization in 1998 with only three members. Today, our membership database in Canada tops 125. The Board consists of six members, and four Chapter Chairs, all of whom are volunteers. The VHLFA was able to fund over $100,000 last year to VHL researchers.
4227 HAMILTON RD.
Contact Name:Jill Shields