Rare Disease in the News

With $2M Seed, Perlstein Lab Tests Unorthodox Rare-Disease Plan
Xconomy
After a year bootstrapping an ambitious project to find treatments for diseases too rare to attract drug industry attention, he just raised a $2 million seed round for his Perlstein Lab, with a chunk of the cash coming from publicly traded rare disease ...


Times of India

Woman suffering from rare disease, sheds 'blood tears'
Times of India
... Dr Manoj Saluja, who is currently treating Lakshaya said, "it is for the first time in his professional career that he has seen a such patient and claimed Lakshaya is the third patient traced so far suffering from this rare disease of 'spontaneous ...
Rajasthan: 22-year old woman diagnosed with rare disease that sheds 'blood ...Zee News

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FDA Boosts Sarepta With Prognosis for its Rare Disease Drug
Wall Street Journal (blog)
A top FDA official says the agency is exploring all “potential pathways” to approve new drugs to treat the rare childhood disease, which causes muscles in boys to stop working and eventually results in death because they can no longer breathe. “We ...

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New York Daily News

Rare tick-borne disease found in New York area
New York Daily News
A scary new strain of an illness similar to Lyme diseasehas made it to our area, but thankfully, the only child in New York ever reported to have this form of the illness has made a full recovery. Water Mill resident Christine Brennan's 13-year-old son ...
Long Island Boy Diagnosed With Rare Strain of Lyme DiseaseNBC New York
Sudbury health unit advises checking for ticksThe Sudbury Star
They are feeding on your bloodIsle of Man Today
PR Web (press release)
all 30 news articles »

Toronto Sun

Man with rare disease mocked online by Shaquille O'Neal
MyFox Chicago
A Michigan man who suffers from a rare disease is suing a trio of celebrities, including former NBA legend Shaquille O'Neal, for mocking him on social media earlier this year. Jahmel Binion, of Warren, filed a lawsuit in Macomb County on Wednesday ...
Warren man sues Shaquille O'Neal, Trey Burke over online mockingThe Macomb Daily

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Irish Independent

Mum of tragic boy (4) with rare disease struggles to raise €10k for necessary ...
Irish Independent
He has open wounds as a result of a condition deterioration last January and suffers night-time seizures. Adam was born in 2010 with a a twisted bowl and a heart irregularity - his heart was beating too fast. His parents were told he 'probably wouldn't ...


Fundraiser this Saturday to help Brookside boy get treatment for rare disease
North Jefferson News
BROOKSIDE — A Brookside boy with a rare cancer-like disease needs treatment in Texas, and his family and friends are hosting a fundraiser this weekend to help. Leigh Ann Mahaffey said insurance is not covering the cost of her son Rio, 3, as he seeks ...


Sharon Kramer Sutton, 30 Year Veteran of Rare Disease Advocacy, Appointed ...
Insurance News Net
Like many others with this rare disorder it took several years to get an official diagnosis. This lack of awareness, even among the medical community, is something that Sharon would like to change. She is now committed to help make things better for ...

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NBCNews.com

Medical Mysteries: New Network Will Help Rare Disease Detectives
NBCNews.com
They baffle even the finest specialists: rare diseases that affect only a handful of people and that are often caused by extremely rare genetic mutations. Now the National Institutes of Health is setting up a network of research centers where doctors ...
Vanderbilt Will Work With The NIH To Investigate Rare Genetic DiseasesWPLN (blog)

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Rare diseases drug plan announced for New Brunswick
CBC.ca
“The cost of drugs to treat rare diseases can sometimes reach a million dollars per year per patient, and often, due to the rarity of the conditions, demonstrating a drug's efficacy through clinical trials is difficult,” Health Minister Ted Flemming ...
NB sets up fund for rare disease drug costsTheChronicleHerald.ca

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