Rare Disease News

NORD AND TRIO HEALTH PUBLISH NEW BOOK TO PROVIDE CRITICAL PATIENT INSIGHTS INTO THE BURDEN OF LIVING WITH AND TREATING RARE DISEASES

Published June 3, 2019 by NORD

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This collection of real-world insights is informed by scientifically validated, patient-reported data collected by NORD’s registry community.

Arthur’s CIDP Story

Published May 22, 2019 by NORD

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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 …

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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 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 IAMRARE HI Global Registry Launched

Published October 9, 2018 by NORD

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Yesterday, a NORD Member Organization and IAMRARE™ Registry Client, Congenital Hyperinsulinism International (CHI), officially launched their patient registry, HI Global Registry. NORD’s IAMRARE Registry Program was built to address the …

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Five Years of Patient Registry Success: NORD’s IAMRARE™ Registry Program Celebrates New Partnerships and Models of Engagement

Published October 3, 2018 by NORD

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Listen to recent comments from Janet Woodcock, Director CDER, FDA on NORD and the importance of natural history registries for rare disorders.

Three Big Reasons Not to Miss the 2018 NORD Rare Summit

Published September 12, 2018 by NORD

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1. Raves About the Rare Summit “Inspiring and Informative. Brought me to the realization that though I may feel my ‘disease’ is the only one – there are many who …

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