VHL ALLIANCE INC
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Mission Statement
VHLA is dedicated to research, education, and support to improve awareness, diagnosis, treatment, and quality of life for those affected by VHL.
About This Cause
VHL or von Hippel-Lindau disease is a genetic form of cancer. VHL patients battle a series of tumors throughout their lives. The VHL gene controls the major feeding pipeline of every tumor. Curing VHL is one step closer to curing many other forms of cancer. The VHL Alliance empowers patients and their health care teams to manage the health of the patients. Central to patient care is the VHL Handbook: What You Need to Know About VHL, written and published by VHLA. The Handbook, also available in a children’s version, is the only document in patient-accessible language that offers tips on diagnosis and treatment while providing constructive ways of living with VHL. The VHL Alliance is a 501c3 non-profit organization founded in 1993 by three families with VHL to share experiences, learn from one another, support one another, and help the doctors understand and treat VHL, and make life for patients. Today, the VHL Alliance is the preeminent resource and clearing house of patients, caregivers, researchers and the medical community. VHLA is connected with approximately 90% of all diagnosed VHL patients throughout the world. The VHL Alliance is about education, support, diagnosis, treatment, research, building awareness, patients, caregivers, clinicians, and researchers. The VHL Alliance connects patients with others living with VHL, answers questions for physicians, or field questions to appropriate experts. In other words, VHLA is an educational and support resource through a toll-free hotline, personal conversations including a mentor program, the Internet (VHLA website and social networking), quarterly newsletters, monthly wellness e-letters, annual national family meetings, regional meetings, vhl handbooks, VHL affiliates in 28 countries around the world, and VHL Clinical Care Centers in the U.S. and around the world