March 2, 2018
TOPIC: Uncategorized, Featured News, Patients & Members, Research
Posted at March 3, 2018 03:09 pm by Laura Mullen
*The following is a a guest blog posting by NORD’s Director of Research Programs, Vanessa Boulanger, originally published 2/28/18 on PCORI.org at https://www.pcori.org/blog/changing-landscape-rare-disease-research?utm_source=general`
A rare disease, by definition, affects fewer than 200,000 individuals in the United States. Up to 30 million Americans have a rare disease, and most conditions are poorly understood. The National Organization for Rare Disorders (NORD), the… Read More
March 27, 2017
TOPIC: Uncategorized, Press Releases
Posted at March 3, 2017 03:29 pm by Jennifer Huron
As part of its efforts to educate medical professionals about rare diseases, NORD, the leading independent nonprofit representing the 30 million Americans with rare diseases, is pleased to announce publication of the 3rd annual Rare Neurological Disease Special Report™, with Neurology Reviews®, a Frontline Medical Communications (FMC) print and digital media publication.
Published as a supplement to the… Read More
September 30, 2016
Posted at September 9, 2016 03:48 pm by Jennifer Huron
Washington, D.C., September 30, 2016 – Today, President Obama signed the Advancing Hope Act (S. 1878), extending the Rare Pediatric Disease Priority Review Voucher (PRV) program until December 31.
“On behalf of the 15 million children with rare diseases, we thank the President for signing the Advancing Hope Act so… Read More
June 28, 2016
Posted at June 6, 2016 12:35 pm by Jennifer Huron
A recent article in the Financial Times (June 24, 2016) looked at the growing impact families have on medical research. According to the Center of Strategic Philanthropy at the Milken Institute, family foundations provide approximately 3 percent of all medical research funding in the U.S. Families also help bridge… Read More
May 11, 2016
Posted at May 5, 2016 12:41 pm by Lisa Sencen
When he was six years old, Arthur Caplan came down with polio and was temporarily paralyzed. That episode – which included time at Boston’s Mass General Hospital followed by rehab – “always left me with a patient perspective,” Dr. Caplan says.
That perspective and his tendency to be drawn to complex issues have led him… Read More