Published March 2, 2018 by NORD
*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 …
Continue reading “Changing the Landscape of Rare Disease Research”
Read morePublished March 27, 2017 by NORD
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 …
Continue reading “NORD and Neurology Reviews Publish Special Report”
Read morePublished September 30, 2016 by NORD
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 …
Continue reading “President Obama Signs Advancing Hope Act”
Read morePublished June 28, 2016 by NORD
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 …
Read morePublished May 11, 2016 by NORD
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 …
Continue reading “Dr. Arthur Caplan: 2016 Rare Impact Award Honoree”
Read morePublished May 11, 2016 by NORD
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 …
Continue reading “Dawn Laney: 2016 Rare Impact Award Honoree”
Read morePublished May 11, 2016 by NORD
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 …
Continue reading “Debra Miller: 2016 Rare Impact Awards Honoree”
Read morePublished May 8, 2016 by NORD
Rare Moms are resilient; fighting the battle against rare diseases day in and day out. Whether they’re a mother dealing with a diagnosis themselves or a mother who is caring …
Continue reading “Happy Mother’s Day from NORD!”
Read morePublished October 19, 2015 by NORD
The National Organization for Rare Disorders (NORD)®, the leading independent nonprofit committed to the identification, treatment and cure of rare diseases, announces the appointment of two new hires: Catherine Blansfield, …
Continue reading “NORD Announces New VP of Patient Services and General Counsel”
Read morePublished August 31, 2015 by NORD
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