Rare Disease News

Member Spotlight: Cure SMA

Published August 10, 2015 by NORD

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August is Spinal Muscular Atrophy Awareness Month! We’re putting the spotlight on Cure SMA to support their awareness month!

Requests for Proposals

Published August 3, 2015 by NORD

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Grants now available for research into seven different rare diseases. Deadline to submit applications is July 31st.

NORD Issues Statement on FDA’s New Associate Director for Rare Diseases

Published July 23, 2015 by NORD

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The following statement was issued by Peter L. Saltonstall, President and CEO of the National Organization for Rare Disorders (NORD), on today’s announcement that Jonathan C. Goldsmith, MD, FACP, will …

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Member Spotlight: WSCTF

Published July 20, 2015 by NORD

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Worldwide Syringomyelia & Chiari Task Force is located in Georgia and works to provide support and advocacy for those affected by Syringomyelia and Chiari.

Member Spotlight: AGMD

Published July 13, 2015 by NORD

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The Assocation of Gastrointestinal Motility Disorders, Inc. serves as a beacon of hope for those living with digestive motility disorders.

Member Spotlight: CdLS Foundation

Published July 6, 2015 by NORD

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The CdLS Foundation provides a host of services that educate and unite families touched by Cornelia de Lange Sydrome. Get the inside scoop about this organization by reading this Q&A.

Member Spotlight: AMEN Support

Published June 29, 2015 by NORD

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American Multiple Endocrine Neoplasia Support (AMEN Support) is the NORD Membership Organization in the spotlight this week! Check out the Q&A we did with the organization!

People Magazine Turns Spotlight on Rare Diseases with Personal Stories from Country Music Star Randy Rogers and Model Lauren Wasser

Published June 26, 2015 by NORD

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Rare diseases gain national exposure with two articles in People’s Magazine

Member Spotlight: UMDF

Published June 22, 2015 by NORD

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Check out this Q&A with United Mitochondrial Disease Foundation!

Rare Disease is a Common Cause

Published June 9, 2015 by NORD

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Beau Biden, former Attorney General of the State of Delaware and son of Vice President Joe Biden, passed away on Saturday, May 30, due to brain cancer. Since it was announced that …

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