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April 30, 2019

TOPIC: Featured News, Press Releases, Research

NORD Research Grant Program Celebrates 30th Anniversary, Funding Opportunities Announced

Posted at April 4, 2019 12:41 pm by Christina Jensen

All U.S. and international researchers are encouraged to apply by the initial application deadline of June 18, 2019

Washington, DC, April 30, 2019 – The National Organization for Rare Disorders® (NORD), the leading independent nonprofit organization representing the 25-30 million Americans living with rare diseases, is celebrating the 30th anniversary of its… Read More

April 26, 2019

TOPIC: Featured News, Get Involved, Patients & Members, Press Releases, Research

NORD IAMRARE DHPS Patient Registry Launched

Posted at April 4, 2019 10:19 am by Christina Jensen

Yesterday, a NORD Member Organization and IAMRARE™ Registry Client, The DHPS Foundation, officially launched their patient registry, DHPS Patient Registry. NORD’s IAMRARE Registry Program was built to address the special needs of those developing treatments for rare diseases with extensive input from FDA, NIH, patients, organizations and experts in the field. We are pleased to share the press release… Read More

April 17, 2019

TOPIC: Featured News, Medical, Press Releases, Research

The 2019 Rare Neurological Disease Special Report Is Now Available

Posted at April 4, 2019 09:10 am by Christina Jensen

This 5th annual issue is the largest to date and focuses on the progress
in medical science, genetics, and neuromuscular diseases

Parsippany, NJ – April 16, 2019 – Frontline Medical Communications (FMC) is pleased to announce the publication of the 2019 Neurology Reviews Rare Neurological Disease Special Report. Produced in collaboration with the National Organization for Rare Disorders… Read More

March 8, 2019

TOPIC: Featured News, Press Releases, Research

NORD IAMRARE GBS|CIDP Patient Registry Launched

Posted at March 3, 2019 09:14 am by Christina Jensen

Last week, a NORD Member Organization and IAMRARE™ Registry Client, GBS\CIDP Foundation, officially launched their patient registry, GBS|CIDP Patient RegistryNORD’s IAMRARE Registry Program was built to address the special needs of those developing treatments for rare diseases with extensive input from FDA, NIH, patients, organizations and experts in the field. We are pleased… Read More

March 8, 2019

TOPIC: Featured News, Press Releases, Research

NORD IAMRARE APS Type 1 Patient Registry Launched

Posted at March 3, 2019 09:09 am by Christina Jensen

Last week, a NORD Member Organization and IAMRARE™ Registry Client, The APS Type 1 Foundation Inc., officially launched their patient registry, APS Type 1 (APECED) RegistryNORD’s IAMRARE Registry Program was built to address the special needs of those developing treatments for rare diseases with extensive input from FDA, NIH, patients, organizations… Read More