Rare Disease in the News

BioPontis, Reborn as Nonprofit, Takes On Rare Disease Drugs
Xconomy
Of the more than 7,000 rare diseases that each affect just a sliver of the population, an estimated 95 percent of them have no treatment. The lack of treatments is an economic problem, not a scientific one, says Barbara Handelin, CEO of the BioPontis ...
The Hereditary Neuropathy Foundation and BioPontis Alliance for Rare Disease ...PR Newswire UK (press release)

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BBC News

Should we diagnose rare diseases with smartphones?
BBC News
“Most communicable diseases can be diagnosed with a smartphone,” he says. “Rather than putting people into quarantine for three weeks – how about seeing if they harbour it in their blood?” A quicker response could also help prevent mistakes, such as ...


DigitalJournal.com

Study of zebrafish helps boy with rare disease
DigitalJournal.com
The condition is termed rare microcephaly syndrome. Two of the boy's uncles shared many of these symptoms, which suggested a genetic connection (an X-chromosome issue, since the same effect did not appear in the female members of the family).


National Institutes of Health (press release)

NIH funds research consortia to study more than 200 rare diseases
National Institutes of Health (press release)
Physician scientists at 22 consortia will collaborate with representatives of 98 patient advocacy groups to advance clinical research and investigate new treatments for patients with rare diseases. The collaborations are made possible through awards by ...
NIH Allocates $29M to Study 200 Rare DiseasesGenetic Engineering & Biotechnology News (blog)
UAB part of NIH-funded research consortia studying more than 200 rare diseasesUAB News
NIH Provides $29M in Fiscal 2014 to Investigate Rare DiseasesGenomeWeb

all 8 news articles »

Albany Times Union

Rare disease claims new bride
Albany Times Union
She was in the late stages of a rare form of bone cancer when she married Jathyis LaJuett, 20, on Sept. 12. Word of her decision to wed triggered a massive public outpouring, with people from across the country and beyond donating gifts, including the ...

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NorthEscambia.com

Young Wyatt Johnson Loses Fight Against Rare Disease
NorthEscambia.com
Wyatt Johnson of Century passed away late Wednesday afternoon in Atlanta. He was just two and a half. Wyatt suffered from a rare liver disease – Langerhans cell histiocytosis – that required chemotherapy and would have eventually required a transplant.


KREM.com (subscription)

10-year-old recovers from rare illness at Spokane hospitals
KREM.com (subscription)
Jocelynn Carr, 10, recovered from a rare disease known as Guillain Barre Syndrome. (Photo: KREM.com). CONNECT 4 TWEET 5 LINKEDINCOMMENTEMAILMORE. SPOKANE, Wash. -- A 10-year-old girl from Plains, Montana spent the past three and a half ...


The Inquisitr

Leprosy: Ohio Prison Inmate Being Treated For The Rare Disease
The Inquisitr
The Ohio Department of Rehabilitation and Correction medical officer also stated that approximately 95 percent of the human race has a natural immunity to the rare skin disease. The inmate first received treatment for a bacterial or skin infection ...


Standard-Examiner

Parents make memories as Ogden boy fights rare disease
Standard-Examiner
OGDEN — Brett and Melissa Horspool were plenty occupied keeping up with their son Zac, and all of the things he was learning to do as he transitioned from infancy into being a toddler. "He would wave, he would blow kisses," Melissa says. Then last ...


Fox News

Philadelphia baby with rare disease receives liver transplant
Fox News
An 8-month-old Philadelphia baby is recovering after becoming the one of the smallest ever to receive a liver transplant at the Children's Hospital of Philadelphia. Annalise Suthers was born with a rare disease that flushed her skin in a yellow hue and ...

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