Rare Disease News

National Gathering of the Rare Disease Community and Health Professionals Launched with 2019 Living Rare, Living Stronger | NORD Patient & Family Forum Featuring the Rare Impact Awards

Published May 10, 2019 by NORD

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Living Rare, Living Stronger will bring the rare community together with physicians, medical students, and allied health professionals for a program of learning, sharing and connecting.

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

Published May 7, 2019 by NORD

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NORD developed key drug pricing principles with the needs of the rare disease community in mind.

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

Published April 30, 2019 by NORD

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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® …

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NORD IAMRARE DHPS Patient Registry Launched

Published April 26, 2019 by NORD

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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 …

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The 2019 Rare Neurological Disease Special Report Is Now Available

Published April 17, 2019 by NORD

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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) …

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NORD Announces Honorees for 2019 Rare Impact Awards

Published March 12, 2019 by NORD

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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 …

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NORD IAMRARE GBS|CIDP Patient Registry Launched

Published March 8, 2019 by NORD

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Last week, a NORD Member Organization and IAMRARE™ Registry Client, GBSCIDP Foundation, officially launched their patient registry, GBS|CIDP Patient Registry. NORD’s IAMRARE Registry Program was built to address the special needs of those …

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NORD IAMRARE APS Type 1 Patient Registry Launched

Published March 8, 2019 by NORD

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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 …

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

Published January 16, 2019 by NORD

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Get ready to #ShowYourStripes for Rare Disease Day, the biggest day of the year for the rare disease community.

NORD Expands and Enhances its Rare Disease Database®, a Primary Resource for Millions of People Affected by Rare Diseases

Published January 3, 2019 by NORD

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Washington, D.C., January 3, 2019 – Today, the National Organization for Rare Disorders (NORD) announced the completion of extensive additions and improvements to its Rare Disease Database, which serves as …

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