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People & Organizations

A total of 176 posts are filed under People & Organizations
International Conference on Rare Diseases and Orphan Drugs Announces New Board of Directors
Diverse body of expertise to tackle the challenges of rare diseases The International Conference on Rare Diseases and Orphan Drugs (ICORD),… 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
Rare Disease Report Interviews Janet Woodcock – Patients, Clinical Trials, and the FDA
At the NORD Rare Disease and Orphan Drug Breakthrough Summit in Arlington Virginia, we talked with Janet Woodcock, MD, Director of the… Continue Reading
Rare Disease Report: Monty Python Alum Terry Jones has Rare Disease
Terry Jones of Monty Python’s Flying Circus has been diagnosed with Primary Progressive Aphasia (PPA), a type of Frontotemporal Dementia.… Continue Reading
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Rare Disease Report: 2016 NFL Kickoff: Players Who Are Rare Disease Advocates
by Andrew Black for RDR On September 8th, 2016 NFL regular season kicks off with a Super Bowl 50 rematch of the reigning world champions… Continue Reading
Pitt Hopkins Awareness Day Coming September 18th
Organization: Pitt Hopkins Research Foundation Submitted by: Jessica Fletcher Sunday, September 18th marks our 4th annual International Pitt… Continue Reading
Rally on Rainier: Father Climbs For His Son and All Children Impacted by Sanfilippo Syndrome
Carl Kapes (father to two sons impacted by Sanfilippo Syndrome or MPS IIIA) has organized a climb called Rally on Rainier for later this… Continue Reading