Rare Disease News

Join NORD & SSA in Forum on Compassionate Allowances & Rare Diseases

Published October 31, 2017 by NORD

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NORD Board Chair Marshall Summar MD will moderate a National Disability Forum on Compassionate Allowances and Rare Diseases to be hosted by the Social Security Administration (SSA) on Tuesday, Nov. …

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Registration Open!

Published October 13, 2017 by NORD

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Registration is now open for the 35th Anniversary Celebration Presenting the Rare Impact Awards.

FDA Announces First Gene Therapy in U.S.

Published August 31, 2017 by NORD

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In an action the rare disease community has been eagerly awaiting, the Food and Drug Administration (FDA) has announced the first-ever approval of a gene therapy in the U.S. The …

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Advance the Dialogue at the NORD Rare Summit

Published August 15, 2017 by NORD

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Register now for the NORD Rare Summit to advance the dialogue on issues of unprecedented importance to the rare disease community.

NORD Issues Statement on the Senate passage of the Food and Drug Administration Reauthorization Act of 2017

Published August 3, 2017 by NORD

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Washington, D.C., August 3, 2017—The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, issued the following statement in response …

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NORD Announces Keynote Speakers for 2017 Rare Diseases and Orphan Products Breakthrough Summit

Published July 20, 2017 by NORD

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Washington, D.C. July 19, 2017 – The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, has announced two keynote …

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NORD Leads Rare Disease Community Days of Action Campaign to Protect Healthcare Coverage

Published June 20, 2017 by NORD

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Washington, D.C., June 20, 2017 – The National Organization for Rare Disorders (NORD), an independent nonprofit organization representing the 30 million Americans with rare diseases, has launched a nationwide campaign to …

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