Rare Disease News

NORD Names New Director of Membership

Published April 4, 2017 by NORD

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Washington, D.C., April 4, 2017—The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, announces the recent hire of Debbie …

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International Pemphigus & Pemphigoid Foundation Launches Largest-Ever Study of Pemphigus and Pemphigoid

Published March 31, 2017 by NORD

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Research study is open to participants worldwide to advance understanding and treatments for rare disease causing blistering that may be accompanied by severe pain, itching, burning, and stinging. Sacramento, CA …

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NORD and Neurology Reviews Publish Special Report

Published March 27, 2017 by NORD

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As part of its efforts to educate medical professionals about rare diseases, NORD, the leading independent nonprofit representing the 30 million Americans with rare diseases, is pleased to announce publication …

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NORD and Friends of Cancer Research Issue Joint Statement In Advance of this Week’s Congressional Hearings on FDA User Fees

Published March 21, 2017 by NORD

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Washington, D.C., March 21, 2017—The National Organization for Rare Disorders (NORD) and Friends of Cancer Research, two leading organizations that collectively represent millions of Americans with cancer and rare diseases, …

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NORD Joins 86 Organizations to Call on Congress to Protect Medicaid

Published March 20, 2017 by NORD

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Washington, D.C., March 20, 2017 – The National Organization for Rare Disorders (NORD) and 86 other organizations issued a letter today calling on Congress to take a hard look at …

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NORD Issues Statement Opposing the Preserving Employee Wellness Programs Act (H.R.1313)

Published March 15, 2017 by NORD

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Washington, D.C., March 15, 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 opposing the …

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NORD Announces Honorees for the 2017 Rare Impact Awards

Published March 15, 2017 by NORD

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Learn more about our 2017 honorees and register for the Rare Impact Awards.

NORD Issues Statement as House Committees Review the American Health Care Act

Published March 8, 2017 by NORD

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Washington, D.C., March 8, 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 advance …

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NORD Issues Statement on Release of the American Health Care Act

Published March 7, 2017 by NORD

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Washington, D.C., March 7, 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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Eleven Major Patient Groups Outline Joint Position on Health Care Reform

Published March 6, 2017 by NORD

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Washington, D.C., March 6, 2017 – A coalition of eleven nonpartisan patient groups today laid out a joint set of goals they want Congress to focus on as it considers …

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