Orphan Drug Accelerator Cydan Supports Rare Disease Day® and Joins ...
CAMBRIDGE, Mass. — Cydan Development, Inc., an orphan drug accelerator that identifies and de-risks programs with significant therapeutic potential, will join forces with rare disease patients, caregivers and health care advocates in Massachusetts at ...
Rock Hill Herald (press release) - Mon, 23 Feb 2015 04:56



HELP RADEK: Preston man's £10000 fundraising mission
Radek Anusiewic of New Hall Lane, Preston, has Von Hippel Lindau Synrdome, a rare genetic condition that causes tumours to regrow. ... Radek said: “The sooner there is a cure found for this syndrome the better it will be for everyone. I am also ...
Lancashire Evening Post - Sun, 22 Feb 2015 23:18



Commitment runs deep in anti-cancer fundraising effort
For Couples Run organizer Suellen Lindquist, raising money and awareness for Von Hippel-Lindau syndrome is personal: She was diagnosed with the disease in her early 30s, and several of her family members suffer from the rare genetic cancer syndrome.
Ventura County Star - Wed, 11 Feb 2015 16:11

Von Hippel-Lindau Disease - A Case Report and Review of Literature
The familial form of the common clear-cell variant of RCC is von Hippel-Lindau disease. Major manifestations include the development of RCC, pheochromocytoma, retinal angiomas, and hemangioblastomas of the brain stem, cerebellum, or spinal cord [1].
UroToday - Thu, 14 Feb 2013 03:48



The more we know about rare diseases, the more likely we are to find safe and ...
Recently The National Organization for Rare Diseases (NORD), has teamed up with the patient advocacy group that represents people with the rare disease known as Von Hippel Lindau disease. This is a condition with many debilitating symptoms that also ...
FDA.gov (blog) - Thu, 23 Oct 2014 08:00

Medical Marvels at New York Presbyterian Hospital: Man battles VHL disease
Manuel Greco has Von Hippel-Lindau disease. It's a rare condition that causes tumors to grow in certain parts of the body. Most of the tumors are benign but they often grow back after being removed. Manuel has been battling VHL disease since he was 17 ...
WABC-TV - Tue, 12 Aug 2014 18:41



Southern Alberta woman is ready to fight rare disease
Five years ago, 32-year old Erin Matt was finally beginning her teaching career, when her life was turned upside down. Matt had a massive brain tumor and underwent a successful surgery, but shortly later was diagnosed with a rare condition called Von ...
Globalnews.ca - Tue, 02 Dec 2014 14:35

Grey's Anatomy features patient with von Hippel-Lindau disease
The second episode in a three-part series on Grey's Anatomy features a patient with von Hippel-Lindau disease (VHL). The next new episode in the show is expected to air on January 6. The first episode, "Adrift and at Peace," aired Dec.
News-Medical.net - Tue, 14 Dec 2010 20:53


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Last update: September 2014