Who We Are
The VHL Alliance is a well-established non-profit is dedicated to research, education, and support to improve awareness, diagnosis, treatment, and quality of life for those affected by VHL. The VHL Alliance is the preeminent resource and clearing house of patients, caregivers, researchers and the medical community. Von Hippel-Lindau (VHL) is a genetic condition involving the abnormal growth of blood vessels in up to 10 parts of the body. It is caused by a flaw in one gene, the VHL gene, which regulates cell growth causing patients to battle a series of tumors throughout their life.
What We Do
The VHL Alliance is the preeminent resource and clearinghouse for VHL for patients, caregivers, and the medical community. Education is the heart of empowering people with VHL and their families to make the best medical decision possible for their individual situation. Educating both healthcare providers and patients helps achieve the best outcome. Medical research is essential to achieving the VHL Alliance’s vision of discovering a cure for VHL. We are dthe major funder of VHL research. iscoveries from VHL research have directly led to at least eight cancer drugs currently on the market. The VHL Research Council not only reviews and awards grant proposals, $2.3 million to date, but it also coordinates with the broader research community to move forward to finding a treatment and ultimately, a cure. Support to improve awareness, diagnosis, and treatment for VHL patients starts with the Clinical Advisory Council, a team of physicians representing every clinical specialization related to VHL manifestations and care. The Council is tasked with developing the national and global network of Clinical Care Centers. Participating hospitals commit to coordinating, care across medical specialties, thereby improving diagnosis and treatment of VHL.
Nonprofit Opportunities
