Rare Disease in the News

The Register-Guard

Drugmakers see profit in rare disease research
The Register-Guard
TRENTON, N.J. — The global pharmaceutical industry is pouring billions of dollars into developing treatments for rare diseases, which once drew little interest from major drugmakers but now point the way toward a new era of innovative therapies and ...


NBC 10 Philadelphia

Mother-Daughter Team Advocate for Daughter's Rare Disease
NBC 10 Philadelphia
Colleen Johns faces an ironic dilemma. Her 8-year-old daughter Stephanie has a rare disease that causes tumors all over her body and comes with the constant risk of mood swings and seizures. However, many people have never heard of Tuberous ...


NBC Connecticut

Boy Battling Rare Disease Becomes Honorary Police Officer
NBC Connecticut
Hunter Pageau, 9, who is living with a rare and debilitating disease, has been appointed an honorary member of the North Haven Police Department. Updated at 10:58 PM EDT on Friday, Mar 27, 2015. A 9-year-old boy battling a rare, debilitating disease ...


Pembroke Pines preteen helps others despite battling rare disease
Local 10
Janine Stanwood: IF YOU ARE INSPIRED BY THE KIND ACTS OF OF A YOUNG PERSON ELECTRONICS IT IS FOCUSES ON MADISON INFO OH A PEMBROKE PINES PRE-TEEN WHO DESPITE BATTLE APING VERY RARE DISEASE FINDS STRENGTH ...


Yahoo News

Science, patients driving rare disease drug research surge
Yahoo News
TRENTON, N.J. (AP) — The global pharmaceutical industry is pouring billions of dollars into developing treatments for rare diseases, which once drew little interest from major drugmakers but now point the way toward a new era of innovative therapies ...

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WDBJ7

Man runs to raise awareness of rare diseases
WDBJ7
a California man is making his way across the country to raise awareness for those who have rare diseases. Noah Coughlan started his trek in New York. This morning he made his way through Roanoke on his way to San Diego. The Napa Valley Police ...

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WYFF Greenville

Couple raises awareness of rare disease that killed their baby
WYFF Greenville
A couple is raising awareness about a rare disease that killed their baby and a member of the WYFF News 4 extended family. Show Transcript Hide Transcript. Advertising. Video Transcript. A DISEASE SO RARE ONLY ONE IN 50 THOUSAND BABIES ARE ...


ErieTVNews

Spa Fundraiser for Boy With Rare Disease
ErieTVNews
Karen's main goal was to raise awareness for the disease. She added "There are a lot of causes out there that are well known, whether it be breast cancer, or autism, but because this is such a rare disorder, they don't get a lot of money going to this."


Denton Record Chronicle

Family spotlights rare disease
Denton Record Chronicle
At 13 months old, Hallie Barnard was diagnosed with Diamond Blackfan anemia, or DBA, a rare blood disease that prevents bone marrow from producing red blood cells. DBA can be maintained with blood transfusions and steroid treatments, but the only cure ...


National Post

Toronto Maple Leafs grant wish and sign 11-year-old with rare disease to one ...
National Post
Born with a rare disease called Morquio Syndrome that affects his bones, his heart and his hearing, Garrett applied for a chance to spend a day with the Leafs two years ago. He said he loves the Leafs — Bozak, who was born in Regina, is naturally his ...
Beardy's boy gets NHL dream tripSaskatoon StarPhoenix
Maple Leafs finally get a lead and a winWPTZ The Champlain Valley
Maple Leafs 4, Senators 3 (OT)KSPR
News Talk 980 CJME
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