Childhood cancer treatments can result in a host of chronic illnesses
His doctors also uncovered the rare genetic condition responsible for his tumour, Von Hippel-Lindau syndrome, which affects 1 in 36,000 people. His parents, already under strain and now arguing about who was responsible for passing on the faulty gene, ...
Sydney Morning Herald - Thu, 20 Nov 2014 04:45



NORD's Natural History Database Available to Help Researchers Study ...
Through this tool, “NORD is committed to helping ensure that every rare disease has adequate natural history information.” NORD offers a full suite of consulting and support services to assist organizations in setting up their dataset. The Von Hippel ...
MesotheliomaHelp.net (blog) - Thu, 13 Nov 2014 04:33



Clinical Focus In Renal Cell Carcinoma: Clues from Gene Studies
Understanding the genetic basis of a disease would be the first step in developing therapies to target that kidney cancer pathway. For the next decade, Linehan studied patients with von Hippel-Lindau (VHL) syndrome, a hereditary kidney cancer. Starting ...
MedPage Today - Mon, 17 Nov 2014 15:43



Guest speaker motivates at 'DREAM' team luncheon
11/5/2014 - EDWARDS AIR FORCE BASE, Calif. -- Disability Rights Employment Awareness Month wrapped up Oct. 28 with a luncheon at Club Muroc. At the capstone event, guests heard from guest speaker Eric Lipp, founder and executive director of the ...
Edwards Air Force Base - Wed, 05 Nov 2014 10:18

Rare disease patients in EU and US share policy priorities
Our first international databank is with the von Hippel Lindau alliance, and we are working with other patient organisations to help them implement longitudinal natural history studies on the platform. Maintaining the integrity of orphan drug ...
TheParliamentMagazine.eu - Tue, 04 Nov 2014 05:15

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


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Last update: September 2014