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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 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

May 11, 2016

TOPIC: Uncategorized

Dawn Laney: 2016 Rare Impact Award Honoree

Posted at May 5, 2016 12:20 pm by Lisa Sencen

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

May 11, 2016

TOPIC: Uncategorized

Debra Miller: 2016 Rare Impact Awards Honoree

Posted at May 5, 2016 11:53 am by Lisa Sencen

Debra Miller co-founded CureDuchenne in 2003 with her husband, Paul, after their only son was diagnosed with Duchenne Muscular Dystrophy. With a background in sales and marketing, she leads CureDuchenne and has funded seven research projects that have advanced to human clinical trials, three of which are the closest to becoming the first approved treatments for the… Read More