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August 19, 2019

TOPIC: Uncategorized

Read the Inspiring Personal Story of a NORD Member Organization Leader

Posted at August 8, 2019 09:45 am by Valaree DonFrancesco

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.



May 20, 2019

TOPIC: Uncategorized

NORD Launches New Program Aimed at Providing Caregivers with Relief

Posted at May 5, 2019 04:00 pm by Lisa Sencen

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

November 29, 2018

TOPIC: Uncategorized, Press Releases, Medical

NORD Publishes Report on Post-Transplant Lymphoproliferative Disease

Posted at November 11, 2018 09:16 am by Valaree DonFrancesco

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

July 9, 2018

TOPIC: Uncategorized, Featured News, Patients & Members, Patient Stories

Moving documentary on Joshua Frase Foundation, Nibs – the matriarch of the first ever MTM dog colony, and the power of patient advocacy

Posted at July 7, 2018 09:55 am by Valaree DonFrancesco

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

March 2, 2018

TOPIC: Uncategorized, Featured News, Patients & Members, Research

Changing the Landscape of Rare Disease Research

Posted at March 3, 2018 03:09 pm by Valaree DonFrancesco

*The following is a a guest blog posting by NORD’s Director of Research Programs, Vanessa Boulanger, originally published 2/28/18 on at`


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