VHL Family Alliance
The VHL Family Alliance was founded in 1993 by three wives of people with von Hippel-Lindau disease. The organization created a handbook, now in its 3rd edition, that has dramatically affected the manageability of VHL by giving patients and their local doctors, the information they need to monitor the disease. In the last year alone the VHL Family Alliance has established a relationship with National Disease Research Interchange (NDRI), which has broadened its research biobank and improved its ability to foster research. The VHL Family Alliance is located in Boston, Massachusetts.