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The information contained in the Organizational Database (ODB) is provided for informational purposes only. There is no implied endorsement by NORD. NORD does not promote or endorse participation in any specific organization. The information is subject to change without notice. Every effort is made to ensure that the details for each entry are as current as possible.


VHL Alliance


Address

1208 VFW Parkway
Suite 303
Boston, MA 02132 USA

Phone

6172775667

Fax

8587128712

800 Number

8007674845

Email Address

info@vhl.org

Description

The VHL Alliance is a voluntary, non-profit organization dedicated to improving diagnosis, treatment, and quality of life for individuals and families affected by von Hippel-Lindau disease (VHL). VHL is an inherited multisystem disorder characterized by the abnormal growth of blood vessels (angiomatosis) in certain areas of the body, such as the retinas, the brain, the spinal cord, and/or the adrenal glands. Established in 1993, the alliance is committed to distributing current information about VHL to affected individuals, family members, and physicians; promoting research studies and providing research grants; maintaining a VHL tissue bank; and enabling affected individuals to exchange information, resources, and mutual support through its networking programs. The alliance also helps establish standards for clinics that specialize in the diagnosis and treatment of VHL and provides referrals to designated clinical care centers in the United States and around the world. In addition, it offers telephone support, engages in patient and family advocacy, and assists in the development of local chapters. The organization provides a variety of educational materials in several languages.

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