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April 4, 2017

TOPIC: Press Releases

NORD Names New Director of Membership

Posted by Jennifer Huron

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 Drell as Director of Membership.  In her role, Debbie will be responsible for overseeing NORD’s Membership programs, which support the collective and individual needs of rare disease patient organizations,… Read More

March 31, 2017

TOPIC: Patients & Members, Press Releases, Research

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

Posted by Jennifer Huron

 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.

ippf logoSacramento, CA and Washington, D.C., March 31, 2017—The International Pemphigus & Pemphigoid Foundation (IPPF), a NORD member organization, has launched… Read More

March 27, 2017

TOPIC: Press Releases, Uncategorized

NORD and Neurology Reviews Publish Special Report

Posted by Jennifer Huron

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 of the 3rd annual Rare Neurological Disease Special Report™, with Neurology Reviews®, a Frontline Medical Communications (FMC) print and digital media publication.

Published as a supplement to the… Read More

March 21, 2017

TOPIC: Advocacy, Press Releases

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

Posted by Jennifer Huron

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, issued the following statement in advance of this week’s congressional hearings on the reauthorization of FDA user fees:

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March 20, 2017

TOPIC: Advocacy, Press Releases

NORD Joins 86 Organizations to Call on Congress to Protect Medicaid

Posted by Jennifer Huron

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 the likely significant and life-threatening consequences of the American Health Care Act on millions of patients. The organizations represent Americans with complex health needs who rely on Medicaid for… Read More