Rare Disease in the News


Rare Disease Caused By Tick Found In Oklahoma; Second Case In US
STILLWATER, Oklah. (KFOR) — Health officials say an Oklahoma resident has been diagnosed with a rare tick borne disease. The Centers for Disease Control and Prevention say that a Payne County resident tested positive for Bourbon virus. This case is ...
Oklahoma resident second confirmed case in US of rare tick-borne illnessFox News
Second case of rare Bourbon virus found in U.S.Big News Network.com

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Rare disease groups seek higher profile with pharma, authorities
Spearheaded by the European rare diseases group Eurordis, a new organization with 60 patient reps from 30 countries will kick off in Madrid on May 28 to draw attention to those who suffer from diseases that lack a big enough market to attract ...


Family goes international to treat children's rare disease
Rylee and Caden Fisch are brother and sister and they are living with the same, rare genetic disease called Muscular Leukodystrophy. The disease eats away at the nervous system, ultimately shutting down motor skills and movement. Rylee has shown ...


FDA approves sirolimus for rare lung disease
American Pharmacists Association, pharmacist.com
FDA has approved sirolimus (Rapamune—Wyeth) for the treatment of lymphangioleiomyomatosis (LAM). This is the first drug approved to treat the rare, progressive lung disease that affects mostly women of childbearing age. Only between 2 and 5 ...
FDA Clears Sirolimus (Rapamune) for Rare Lung DiseaseMedscape
FDA approves Rapamune to treat LAM, a very rare lung diseaseFDA.gov
Rapamune Approved for Rare Lung DiseaseU.S. News & World Report

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Ottawa Sun

$7.6M funding to help CHEO research rare diseases
Ottawa Sun
Sienna Knapp OTTAWA - May 29, 2015 - Sienna Knapp, a 10-year-old Kingston girl and CHEO patient, hugs her doctor, Dr. Kym Boycott Friday during a funding announcement for a $7.6-million program to research the causes of rare pediatric diseases.
Ottawa researchers share $30M in new federal fundingOttawa Citizen

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Cypher Genomics, Clinic for Special Children Collaborate on Rare Disease ...
NEW YORK (GenomeWeb) – Cypher Genomics and the Clinic for Special Children (CSC) today announced a collaboration to diagnose rare genetic diseases. Strasburg, Pennsylvania-based CSC will use Cypher's automated genomic interpretation tools to ...
Cypher Genomics and Clinic for Special Children Collaborate on Rare Disease ...Virtual-Strategy Magazine (press release)
Cypher Genomics, Clinic for Special Children to collaborate on rare disease studySan Diego Source (subscription)

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NC House OKs infant screening for rare disease
News & Observer (blog)
Newborn babies would be tested for severe combined immunodeficiency – also known as SCID or “bubble boy disease” – under a bill that passed the N.C. House Thursday. The Baby Carlie Nugent Bill, named for a Union County infant who died of the ...

Boston Business Journal (blog)

These dozen Mass. companies are honed in on drugs for rare diseases (BBJ ...
Boston Business Journal (blog)
Of the many biotechs in the Boston area developing drugs for rare diseases, just a handful have made it all the way to U.S. approval. But by this time next year, that number could increase by at least one after last week's news out of Sarepta Therapeutics.

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Man in New Jersey Dies of Rare Viral Disease After Returning From Liberia
New York Times
The patient did not have a fever on departure from Liberia, the Centers for Disease Control and Prevention said, or any symptoms such as bleeding, diarrhea or vomiting. When he arrived in the United States, his temperature was taken and again, he did ...
Search is on after man dies of rare diseaseNewsOK.com
CDC steps in after New Jersey man dies of rare viral disease LassaUPI.com
Rare viral disease kills US man back from LiberiaTimes of India
SunHerald.com -lehighvalleylive.com
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Fundraiser set for Upper Merion Area High School teen battling rare disease
The Times Herald
She does this twice a day as she fights her battle against MCAD (Mast Cell Activation Disorder) and POTS (Postural Orthostatic Tachycardia Syndrome). Mast Cell Disease is a rare and life changing disease that causes her to suffer from fatigue, bone and ...