Rare Disease News

Patient Advocacy Organizations Outline Joint Position on Expanded Access to Experimental Drugs for Seriously Ill Patients

Published May 2, 2017 by NORD

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WASHINGTON, D.C., May 2, 2017–Seven patient advocacy organizations today laid out a joint set of principles to guide any efforts that seek to change the process of accessing unapproved therapies …

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Leading Patient Advocacy Groups Stand Together to Oppose American Health Care Act

Published May 1, 2017 by NORD

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Washington (May 1, 2017) – On behalf of more than one hundred million Americans battling chronic and other major health conditions, a coalition of 10 patient organizations remains united in …

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NORD Issues Statement Opposing ‘MacArthur Amendment’, the Latest Version of the American Health Care Act

Published May 1, 2017 by NORD

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CALL TO ACTION: Congress could vote this week – please take a minute to phone your legislators and ask them to vote no (click) Washington, D.C., May 1, 2017—The National …

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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.