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Sunday, November 23, 2014

Albany Times Union

11-year-old with rare disease is UAlbany's top recruit
Albany Times Union
Elven-year-old JP Honsinger, center, who is suffering from rare childhood alzheimer's disease, lines up with the UAlbany basketball team during the national anthem Wednesday night, Nov. 19, 2014, at SEFCU Arena in Albany, N.Y. (Michael P. Farrell/Times ...

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Saturday, November 22, 2014

Ottawa Citizen

Senators sign teen battling rare disease to one-day scouting contract
Yahoo Canada Sports (blog)
Jonathan Pitre's afflication prevents him from playing sports. The 14-year old suffers from epidermolysis bullosa (EB), a genetic disease that causes blistering of the skin, making things like bathing and walking painful to do. The Ottawa Citizen ...
'Butterfly Child' Jonathan Pitre 'joins' Sens scouting staff (with video)Ottawa Citizen

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Friday, November 21, 2014

Ottawa Citizen

Senators sign teen battling rare disease to one-day scouting contract
Yahoo Sports (blog)
Jonathan Pitre's afflication prevents him from playing sports. The 14-year old suffers from epidermolysis bullosa (EB), a genetic disease that causes blistering of the skin, making things like bathing and walking painful to do. The Ottawa Citizen ...
'Butterfly Child' Jonathan Pitre 'joins' Sens scouting staff (with video)Ottawa Citizen

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Friday, November 21, 2014

Myositis: Local residents confront, connect through rare disease
Los Altos Town Crier
Imagine the fear and isolation of being diagnosed with a disease so rare that most doctors only see a few cases in their entire careers, if at all. Now imagine the comfort and relief in finding fellow sufferers not just in your state or region, but ...

Friday, November 21, 2014

Computational approaches may expedite drug repurposing for rare diseases
ScienceBlog.com (blog)
Drug repurposing is predicated on the fact that many diseases are caused by the dysregulation of similar signaling pathways, or that drugs may affect several biological targets at once, meaning that a single drug may be able to treat multiple diseases.

Thursday, November 20, 2014

Jenison teen who fought rare disease for 10 years dies
MLive.com
Her mother, Mary Veldink, said that although Olivia had been living for about 10 years with the disease ataxia-telangiectasia (AT), a neruo-degenerative disease with no known cure, Olivia was a "fully involved junior higher" at Jenison Junior High.

Thursday, November 20, 2014

Surviving the Rare Disease Roller Coaster
U.S. News & World Report
And indeed, that's a common misdiagnosis for the devastating disease Eliza actually had: Sanfilippo syndrome, a rare genetic metabolic disorder that gets progressively worse in children after age 5 and typically causes their death when they're in their ...
Family raises $1.8M for SC girl with rare disease - WFSB 3 ConnecticutWFSB

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Thursday, November 20, 2014

Family works to raise $1.8M for SC girl with rare disease - WFSB 3 Connecticut
WFSB
A little girl in South Carolina with a rare disease is living life in a quarantine while her family is fighting to raise almost $2 million along the way. Eliza O'Neill, 5, has Sanfilippo syndrome, causing her family to live in quarantine for several ...

Thursday, November 20, 2014

Clinic-developed software to support NIH/NCATS global rare diseases registry
Broadway World
20, 2014 /PRNewswire/ A computer software program developed at Marshfield Clinic Research Foundation (MCRF) soon will support the National Institutes of Health (NIH)/National Center for Advancing Translational Sciences (NCATS) Global Rare Diseases ...

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Thursday, November 20, 2014

Medical Xpress

Study discovers how rare disease causing cardiovascular and cognitive ...
Medical Xpress
A study has discovered the molecular mechanism that triggers homocystinuria, which is a rare disease that causes vascular and ocular disorders, skeletal deformities and mental retardation. It affects 1 in every 250,000 children born in Spain, and it ...