Latest News

Saturday, October 01, 2016

The Statesman

Helpless father sees rare disease afflicting kids
The Statesman
For the last eight years Ebane Hassan from Moradabad has been coming to the Capital for getting treatment for his two children who suffer from Gaucher's disease, a rare disorder, but the treatment is costly and he is unable to afford the drugs. "My ...

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Friday, September 30, 2016

Daily Mail

Robin Williams' widow details actor's final months as rare disease took hold of his brain and robbed him of his sanity
Daily Mail
Robin Williams' widow has revealed intimate moments of the actor's final months of life, recalling in heartbreaking detail how a rare brain disease robbed him of his sanity. Susan Schneider, the star's third wife, told how he grew increasingly ...
The terrorist inside my husband's brain - NeurologyNeurology

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Friday, September 30, 2016

whnt.com

Shoals couple raising money to help children who live with rare disease
whnt.com
MUSCLE SHOALS, Ala. – A Muscle Shoals couple is sharing their little boy's story to raise awareness about a life threatening disease. But it recently became twice as important. Kruz Davenport came into the world a little early and he had a rough start.

Friday, September 30, 2016

Market Exclusive

PhaseRx Inc (NASDAQ:PZRX): An Undervalued Rare Disease Play With Multiple Shots On Goal
Market Exclusive
Serving as a backdrop to this decline, the rare disease market is growing at an unprecedented rate. FDA initiatives such as Orphan Drug Designation have incentivized development in the space, and speculative capital is being pumped into target ...

Friday, September 30, 2016

The Robesonian

Robesonian | Church event to benefit local teen with rare disease
The Robesonian
SHANNON — A church fundraiser this weekend will help raise money toward a local 14-year-old's medical treatment for an illness that robs its young victims of ...

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Friday, September 30, 2016

Breitbart News

Migrants Bringing Rare Diseases Strain Health Service
Breitbart News
Incoming migrants are bringing long-eradicated diseases to Germany and are putting the medical system under extreme stress. As well as bringing a rising tide of crime and attitudes towards women that many consider incompatible with modern European ...

Friday, September 30, 2016

Claremore Daily Progress

ZipperQ Throwdown funds research for rare disease
Claremore Daily Progress
The event raises awareness and supports research for Fibrodysplasia Ossificans Progressiva (FOP), an incredibly rare disease that causes bone to form in muscles, tendons, ligaments and other connective tissues. Claremore resident Amy Gordon started the ...

Friday, September 30, 2016

Business Weekly

Global experts in Cambridge rare disease summit
Business Weekly
Cambridge Rare Disease Network (CRDN) has just announced details of its second International Rare Disease Summit – to be held on Tuesday October 25 at Robinson College, Cambridge. A key event in the rare disease calendar, the summit brings ...

Friday, September 30, 2016

Albany Times Union

Watervliet woman starts foundation to raise awareness of daughter's rare disease
Albany Times Union
She met a patient there, 26-year-old Lindsey Sutton of California, and the two hatched an idea. With help from the rare disease advocacy group Global Genes, they launched the FCS Foundation. They have a website and are working to secure a grant to make ...

Thursday, September 29, 2016

Bristol-Myers Squibb (BMY) Presents at Leerink Partners Rare Disease & Immuno-Oncology Roundtable Conference ...
Seeking Alpha
Hey, good afternoon everybody. I'm Seamus Fernandez, Leerink's large pharma analyst. We're very fortunate to have Bristol-Myers here with us today. Perhaps the foremost pioneer in immuno-oncology. And as many of you know, this is our Second Annual ...