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Cancer Research Fund - VHL http://www.vhl.org
Cancer Research Fund / VHL Family Alliance
2001 Beacon Street
Suite 208
Brighton, MA 02135Map thisWe fund research into angiogenesis and tumor growth, and provide morale support and information and referral to people dealing with vascular tumors of the eye, brain, spinal cord, kidney, pancreas, and adrenal glands. These and other tumors occur in a condition called von Hippel-Lindau disease...
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Kicking off VHL Awareness MonthThe VHL Family Alliance (VHLFA) has declared May 2008 as “VHL Awareness Month” in an effort to increase awareness, education and communication about von Hippel-Lindau (VHL)
VHL is a rare disease impacting about 9,000 people in the United States. However, research into VHL poses hopes for advancing the knowledge of cancer in general. The condition knows no racial or geographic boundaries, impacting people in every corner of the globe.
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Medical ResearchVHL Family Alliance Funds Promising Research44% of the budget for the VHL Family Alliance is directly funelled into research grants for the study of VHL and of cancer. Promising advancements have been made. This year's grants include...
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VHL is in the Genes of Amazing PeopleThe genetic disease VHL knows no racial, geographic or age distinctions. It impacts people equally from all over the world. Brooke Elizabeth McLaurin, Miss North Carolina of 2005, has VHL and established VHL and Brain Tumor Awareness as her platform. The rapper and poet Keith Richards has VHL and includes it in his songs and poetry.
VHL effects roughly 1 in 30,000, causing cysts and tumors in the body similar to cancer. It is of special interest to researchers because its study may lead to more general understanding of the disease.
The VHL Family Alliance was started in 1993 to help patients and researchers learn more about this condition.
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Strategic ParnershipsResearch funding can not be done in a vacuum, and so the VHL Family Alliance has built strategic partnerships with many other important organizations including the Genetic Alliance and the National Organization for Rare Diseases (NORD). The VHL website at www.vhl.org is one of the country's most significant resources to people around the world for information about VHL. You can help...
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VHL Family Alliance turns 15Since 1993 the VHL Family Alliance has been making major contributions to the knowledge and treatment of Von Hippel Lindau disease. It is hard to believe that we are now turning 15. So much has happened since those early origins.
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New Study about VHL helps hearingThe results of an imaging study conducted at the Clinical Center at the NIH could help doctors protect and preserve the hearing of people with the rare genetic disorder von Hippel-Lindau disease (VHL) that causes abnormal growth of benign and cancerous tumors in numerous parts of the body.
Homemade Quilts Keep Memories of Mother CloseShe was taken from her mother’s womb during an emergency C-section March 31,2003, a precarious three months shy of her scheduled arrival.
A memory quilt“It started when Anna came to (husband) Mark and me crying one day back in May,” Amanda says. “She said, ‘I miss my Mama Robin. I never got to say goodbye. I never got to touch her.’ That’s a lot for a 4-year-old to cope with.
Last week, Anna was given a memory quilt made of Robin’s dresses and maternity clothes. The quilts also include pictures of Robin at various stages in her life - from 6 weeks to adulthood.
Rare disease offers major insights into cancerWhat can a disease so rare most people have never heard of it teach researchers about a process that affects virtually every type of large tumor?
If you’re William Kaelin, M.D., potentially enough to devise a way of halting one of the most dangerous phases of tumor growth.
