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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 12, 2019

TOPIC: Events, Featured News, Press Releases

NORD Announces Honorees for 2019 Rare Impact Awards

Posted at March 3, 2019 09:35 am by Christina Jensen

Washington, DC, March 12, 2019—The National Organization for Rare Disorders (NORD) today announced the individuals, organizations and industry innovators who will be honored for their outstanding work in support of the rare disease community at this year’s Rare Impact Awards on June 22.

The Rare Impact Awards is an event hosted… Read More

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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 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… Read More

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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) 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… Read More

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January 16, 2019

TOPIC: Advocacy, Events, Featured News, Patients & Members, Press Releases, Rare Disease Day

NORD Issues New Rare Disease DayⓇ Rallying Cry: Show Your Stripes™!

Posted at January 1, 2019 10:45 am by Christina Jensen

Washington, DC, January 16, 2019–The National Organization for Rare Disorders (NORD)Ⓡ, the leading independent nonprofit organization representing the 25-30 million Americans living with rare diseases, has announced a new campaign for Rare Disease Day centering on three simple words: Show Your Stripes, with a call to action for people to literally and figuratively “show their stripes” in… Read More

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Alone we are rare. Together we are strong.®

Copyright ©2019 NORD - National Organization for Rare Disorders, Inc. All rights reserved. NORD is a registered 501(c)(3) charity organization. Please note that NORD provides this information for the benefit of the rare disease community. NORD is not a medical provider or health care facility and thus can neither diagnose any disease or disorder nor endorse or recommend any specific medical treatments. Patients must rely on the personal and individualized medical advice of their qualified health care professionals before seeking any information related to their particular diagnosis, cure or treatment of a condition or disorder.