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A total of 96 posts are filed under Living
A Rockstar, Big Pharma, And an Advocacy Group Unite!
Missing out on important life events is par for the course in many chronic illnesses. Patients are sometimes forced to bail on family and… Continue Reading
Seeking OKU Status for Rare Disease Sufferers
Source Did you know that the last day of February is Rare Disease Day?  Well, this year, the Malaysian Rare Disorders Society (MRDS) took… Continue Reading
RDR: Flu Season Requires Special Precautions for Rare Disease-Affected Individuals
Thanks to the Rare Disease Report for this piece. Some might think that flu season peaks with the busiest time of the year, in November and… Continue Reading
WSJ: The Doctors Who Solve Medical Mysteries
Wall Street Journal | Story by Sumathi Reddy at When patients have a disease that can’t be diagnosed, they get… Continue Reading
University of New Haven Football Team Signs 6-Year-Old Boy with CVID
The University of New Haven football team lost a 4-point game Saturday but did something far more important than winning or losing a… Continue Reading
Spark Therapeutics Launches Initiative to Improve Access to Genetic Testing for Inherited Retinal Diseases
Spark Therapeutics (NASDAQ: ONCE) will provide physicians and eligible patients access to genetic testing and counseling for more than 30… Continue Reading
Home Depot Employees Create Innovative Walker for Boy with Norrie Disease
All of Jessica Johnson’s doubts about her recent move from Oregon to Texas washed away the minute a few kind Home Depot employees entered… Continue Reading

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