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May 7, 2019

TOPIC: Advocacy, Featured News, Industry, Patients & Members, Press Releases

NORD Releases Principles for Assessing Proposals Designed to Lower the Cost of Prescription Drugs in the United States

Posted by Christina Jensen

Washington, DC, May 7, 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 its development of key drug pricing principles, created with the needs of the rare disease community in mind.

People living with rare diseases must be able to afford the therapies that… Read More

April 30, 2019

TOPIC: Featured News, Press Releases, Research

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

Posted 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 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 18, 2019

TOPIC: Events, Featured News, Get Involved, Patients & Members

Become a rare disease mythbuster during NORD’s Living Rare, Living Stronger Patient & Family Forum

Posted by Christina Jensen

The 2019 Living Rare, Living Stronger NORD Patient and Family Forum is a conference in which patients and caregivers can gain insights and practical tools for living their best lives with rare diseases, with tracks for newly diagnosed patients, long-term patients, caregivers, physicians and medical students. Download the full agenda now for a… Read More

April 17, 2019

TOPIC: Featured News, Medical, Press Releases, Research

The 2019 Rare Neurological Disease Special Report Is Now Available

Posted 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