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March 27, 2017

TOPIC: Press Releases, Uncategorized

NORD and Neurology Reviews Publish Special Report

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

TOPIC: Uncategorized

President Obama Signs Advancing Hope Act

Posted at September 9, 2016 03:48 pm by Jennifer Huron

 

white-houseWashington, 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

TOPIC: Uncategorized

NORD in the News: Financial Times Highlights NORD’s Training and Advice for Family Foundations

Posted at June 6, 2016 12:35 pm by Jennifer Huron

financialtimesA 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

TOPIC: Uncategorized

Dr. Arthur Caplan: 2016 Rare Impact Award Honoree

Posted at May 5, 2016 12:41 pm by Christina Jensen
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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

May 11, 2016

TOPIC: Uncategorized

Dawn Laney: 2016 Rare Impact Award Honoree

Posted at May 5, 2016 12:20 pm by Christina Jensen
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A leading expert in her field, Dawn Laney, M.S., C.G.C., C.C.R.C. is a genetic counselor, instructor, and program leader at Emory University in the Department of Human Genetics.  She manages Emory’s infusion center and lysosome storage disease clinical research, and is a sought-after specialist in Fabry Disease, a rare genetic disorder that can lead to kidney failure,… Read More