With the help of patient groups, biotechs hone in on rare diseases
The organizations is focused on a genetic form of cancer called von Hippel-Lindau, which affects only about 200,000 patients in the world (the same gene can also be involved in other types of cancer). The registry is aimed at collecting data from ...
Boston Business Journal (blog) - Thu, 26 Feb 2015 11:23



Brain tumour sufferer speaks movingly about his condition and special ...
It took them four weeks to diagnose him with another tumour and a deeper genetic problem called Von Hippel-Lindau disease. It means tumours continue to grown in Lloyd's stomach, pancreas and kidneys. He has to have tumours removed every two or three ...
Batley News - Fri, 06 Mar 2015 07:33



Metastatic pheochromocytoma, paraganglioma occur equally in sporadic, SDHx ...
AST in adult patients with metastatic disease, suggesting that other genetic and epigenetic factors besides SDHx mutations play an important role in the pathogenesis of metastatic pheochromocytomas and paragangliomas,” Tamara Prodanov, MD, of the ...
Healio - Tue, 10 Mar 2015 12:40



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

Von Hippel-Lindau Disease - A Case Report and Review of Literature
Von Hippel-Lindau disease is a dominantly inherited familial cancer syndrome with variable expression. Here we are reporting a case of von Hippel-Lindau disease in a family. Vedamurthy Pogula Reddy, Dandu Venkata Satya Rambabu, Surya Prakash ...
UroToday - Thu, 14 Feb 2013 03:48

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



Hatfields vs. McCoys might truly be a blood feud
The girl's outbursts were the result of a rare genetic disorder — von Hippel-Lindau disease — that can cause surges in fight-or-flight hormones, like adrenaline. The condition itself is interesting to scientists, but its appearance in this one child ...
New York Daily News - Sat, 27 Dec 2014 17:30


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Last update: September 2014