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May 22, 2019

TOPIC: Patient Stories, Patients & Members, Research

Arthur’s CIDP Story

Posted at May 5, 2019 10:34 am by Lisa Sencen

The following story was submitted by Arthur Gause in honor of May’s Rare Spotlight, Chronic Inflammatory Demyelinating Polyneuropathy (CIDP). In this story, Arthur reflects on his diagnostic journey and the importance of continued rare disease research. A special thanks to NORD’s Member Organization,
the GBS|CIDP Foundation for sharing this story during CIDP… Read More

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 Lisa Sencen

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 Lisa Sencen

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 Lisa Sencen

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 Lisa Sencen

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