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Wednesday, June 19, 2013

MASON CITY — A benefit will be held Saturday, June 22, for a Mason City ...
Mason City Globe Gazette
Jamaica's condition was not immediately diagnosed, so rare is the disease. In April, she was having daily fevers, extreme joint pain and full-body rashes. Mayo Clinic diagnosed the disease after two weeks of daily testing. Mayo sent her bone marrow to ...

Wednesday, June 19, 2013

Rare disease causing kidney failure
Sharonherald
WEST SALEM TOWNSHIP — With no idea what happened, 20-year-old Josh Weidner of Pymatuning Township has found himself going to dialysis three times a week, instead of the college class he planned, and is about a year into an 18-month or longer ...

Wednesday, June 19, 2013

OUR ANGELS Shaw family spreading awareness for CdLS
Dickinson County News
A rare genetic disease called Cornelia de Lange Syndrome (CdLS) robbed Angela of a full lifetime here on earth. She would've been 40 years old in 2013. Her parents, Bob and Kate have spent the last 35 years spreading awareness about the disease.

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Tuesday, June 18, 2013

Developing Drugs for Rare Diseases
New York Times
There are laws in place to encourage the development and marketing of medicines for rare diseases, the accommodations justified by the commercial hurdles associated with producing treatments for small populations. While there will be cost of production ...

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Tuesday, June 18, 2013

GALLAGHER: After decades, bonds forged over rare disease still strong
Sioux City Journal
Unlike her older brother, Angela wasn't healthy from Day One. She had Cornelia de Lange syndrome, a rare genetic condition that shows in various physical problems among its victims, and some common traits, too, such as connected eyebrows, small head, ...

Tuesday, June 18, 2013

GALLAGHER: After decades, bonds forged over rare disease still strong
Sioux City Journal
"Our Angels Concert -- A Night to Remember Hud and Angela Shaw and all CdLS Families" takes place at 8 p.m. Saturday at the Sami Center in Spirit Lake, Iowa. Other events Saturday include a panel discussion on CdLS from 9:30 a.m. to noon at Cutty's of ...
OUR ANGELS Shaw family spreading awareness for CdLSDickinson County News

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Tuesday, June 18, 2013

Businesswoman battles rare and incurable disease
The Bolton News
ALYSON Schofield is a successful young business woman determined to achieve her ambitions in life — while battling a rare, incurable and life-threatening condition. The 29-year-old owner of Bolton-based Platinum Studios, a dance and fitness centre ...

Tuesday, June 18, 2013

Funding for rare disease drug now being assessed
Irish Medical Times
The drug — the first therapy approved for the treatment of paroxysmal nocturnal haemoglobinuria (PNH), a rare, progressive and sometimes life-threatening disease characterised by excessive destruction of red blood cells — costs more than €350,000 per ...

Tuesday, June 18, 2013

Buzz on rare disease drugs puts ViroPharma in the M&A spotlight
FierceBiotech
Rare diseases are all the rage these days, putting them in the crosshairs of some of the world's largest drug companies. Clinical trials for these drugs are narrowly defined, requiring small patient populations. And once approved, the treatments--which ...
Charmed by orphan drugs, suitors line up for ViroPharmaFiercePharma
ViroPharma Shares Rise on Report of Drug Company InterestBloomberg

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Tuesday, June 18, 2013