TOPIC: Uncategorized
Neena Nizar, founder and president of the nonprofit Jansen’s Foundation, a NORD Member, was interviewed at the Living Rare, Living Stronger NORD Patient and Family Forum by BioNews Service in June. Read her inspiring personal story here.
#NORDinthenews
TOPIC: Uncategorized
Grant program established with gift from Retrophin
Washington, DC and San Diego, May 20, 2019–The National Organization for Rare Disorders (NORD)Ⓡ, the leading independent nonprofit organization representing the 25-30 million Americans living with rare diseases, has launched the Rare Caregiver Respite Program, a first-of-its-kind program aimed at providing caregivers of rare disease… Read More
TOPIC: Uncategorized, Press Releases, Medical
Washington, DC, November 29, 2018–As part of its ongoing series to promote awareness and education regarding rare diseases, the National Organization for Rare Disorders (NORD) has published a report on Post-Transplant Lymphoproliferative Disease (PTLD) in its Rare Disease Database. This new resource is available free online… Read More
TOPIC: Uncategorized, Featured News, Patients & Members, Patient Stories
The Joshua Frase Foundation (JFF) is a non-profit organization founded with a simple yet seemingly unattainable vision: to find a cure for Myotubular Myopathy (MTM). The journey towards a cure started the day Joshua Frase was born with a disease so rare that he was said to be only one of fifty five known cases around the… Read More
TOPIC: Uncategorized, Featured News, Patients & Members, Research
*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
