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October 26, 2016

TOPIC: Press Releases, Medical

NORD Publishes Physician Guide to Cutaneous T-Cell Lymphoma

Posted at October 10, 2016 10:52 am by Jennifer Huron

Washington, D.C., October 26, 2016—As part of its ongoing series to promote physician awareness of rare diseases, the National Organization for Rare Disorders has published The NORD Physician Guide to Cutaneous T-Cell Lymphoma (CTCL). This new resource is available free online to medical professionals around the world.

As the primary advocacy organization in the U.S. for people who… Read More

October 14, 2016

TOPIC: Press Releases, Featured News, Events, Patient Stories

Nominations Open for NORD’s 2017 Rare Impact Awards

Posted at October 10, 2016 04:47 pm by Jennifer Huron

Washington, D.C., October 14, 2016—The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, today announced it is accepting nominations for the 2017 Rare Impact Awards.

Submissions are now open online at www.rareimpact.org/awards.  Submissions will close on Friday, January 13, 2017.

The 2017 Rare Impact Awards continues NORD’s 31-year tradition… Read More

October 5, 2016

TOPIC: Press Releases, Featured News, Events

Rare Diseases & Orphan Products Breakthrough Summit Speakers

Posted at October 10, 2016 05:58 pm by Jennifer Huron

RareSummit_Logo_RGB_smallWashington, D.C., October 5, 2016 – NORD, the leading independent nonprofit organization representing the 30 million Americans with rare diseases, today announced the three keynote speakers for its 2016 Rare Diseases & Orphan Products Breakthrough Summit to be held Oct. 17-18 in Arlington, VA.

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September 30, 2016

TOPIC: Press Releases, Featured News, Patient Stories

A New Partnership that Helps Raise Awareness of Rare Diseases

Posted at September 9, 2016 10:15 am by Jennifer Huron

We’re thrilled to announce a new partnership that will help raise awareness of rare diseases and connect The Mighty‘s wide-reaching readership with NORD resources. As part of the partnership, NORD, the leading independent 501(c)(3) advocacy organization dedicated to helping people with rare diseases, now has a growing home page on The Mighty and will appear on many… Read More

September 23, 2016

TOPIC: Press Releases, Advocacy

Senate Passes Short-Term Agreement to Accelerate Treatments for 15 Million Sick Children with Rare Diseases

Posted at September 9, 2016 03:04 pm by Jennifer Huron

Unanimous vote extends the Rare Pediatric Disease Priority Review Voucher Program with important policy changes through December

Washington, D.C., September 23, 2016 – On Thursday, the Senate reached an important compromise to accelerate new treatments to help 15 million sick children with rare diseases.

Led by Senators Robert Casey (D-PA), Johnny Isakson (R-GA), and Lamar Alexander (R-TN), the Senate voted unanimously to… Read More