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June 14, 2016

TOPIC: Featured News, Get Involved, Medical, Patients & Members, Research

NORD Speakers Bureau

Posted by Lisa Sencen

Need a Speaker for Your Classroom or Event? Contact NORD!


Teachers, medical school professors, and community members seeking speakers to talk about rare diseases in the classroom or at community events can contact NORD for help. Working closely with its 250 member organizations, NORD now has a Patient/Caregiver Speakers Bureau to match seasoned volunteer speakers with opportunities in their local… Read More

July 21, 2016

TOPIC: Advocacy

NORD Issues Statement in Response to PDUFA VI Commitment Letter

Posted by Paul Melmeyer

On July 15, the Food and Drug Administration released the performance goals letter for the reauthorization of the Prescription Drug User Fee Act, also known as PDUFA VI.  The PDUFA program is the agreement between the FDA and the pharmaceutical industry to pay user fees to facilitate the review of pharmaceutical products. PDUFA must be reauthorized every… Read More

July 15, 2016

TOPIC: Advocacy, Patients & Members

Advocacy Alert: Illinois Rare Disease Commission Bill

Posted by Tim Boyd


UPDATE:  July 11, 2016

Illinois HB 4576 is close to passing!  This bill would establish a Rare Disease Commission that would give patients – many of whom are too young or sick to speak for themselves – a voice in the state government.  The bill is awaiting Governor Bruce Rauer’s signature before it… Read More

July 14, 2016

TOPIC: Advocacy

NORD Issues Statement as Senate Postpones Vote on Cures Legislation

Posted by Jennifer Huron

The following statement was issued by Peter L. Saltonstall, President and CEO of the National Organization for Rare Disorders (NORD), as the Senate announced it would not vote on its Cures legislation, also known as the Senate Innovations for Healthier Americans Initiative, until September at the very earliest.

“On behalf of the 1 in 10 Americans with rare diseases, most… Read More

July 13, 2016

TOPIC: Advocacy, Get Involved

July 13 Day of Action: Last Chance for Zika Funding

Posted by Jennifer Huron

Time is running out – today may be our last chance before September for anything to happen on the critical Zika package.  This Friday, Senators will depart D.C. for their 7-week summer recess.  This is problematic because July and August in the U.S. are the worst months for mosquito and potential Zika activity.

Today, July 13, is a national day… Read More

June 30, 2016

TOPIC: Events, Press Releases

FDA Commissioner Dr. Robert Califf to Speak at NORD Summit in October

Posted by Jennifer Huron

RareSummit_Logo_RGB_240x206The Commissioner of the U.S. Food and Drug Administration, Robert Califf, M.D., will speak at NORD’s annual Rare Diseases & Orphan Products Breakthrough Summit in October.

Commissioner Califf will provide an opening Keynote Address.  As the senior official of the FDA, Commissioner Califf leads the federal agency charged with… Read More