News - Page 2 of 89 - NORD (National Organization for Rare Disorders)

September 5, 2018

Patient/Caregiver Opening Address Announced for NORD Rare Summit

Posted by Laura Mullen

One of the unique aspects of the 2018 NORD Rare Diseases & Orphan Products Breakthrough Summit is its theme, “A New Era of Patient-Focused Innovation,” which we will be examining from a variety of perspectives. Kicking off the Summit will be the Patient/Caregiver Opening Address featuring a panel of young rare disease patient advocates sharing their hopes, thoughts… Read More

Tags: adrenoleukodystrophy, ALD, American University of Integrative Sciences School of Medicine, bicycle, Christopher Anselmo, Dr. Anita Gupta, Gabriel Low, Harjot Randhawa, hypokalemic periodic paralysis, Miyoshi myopathy/limb-girdle muscular dystrophy type 2, Remember the Girls, Taylor Kane

August 29, 2018

TOPIC: Advocacy, Events, Featured News, Get Involved, Industry, Medical, Patients & Members, Press Releases

2018 NORD Rare Summit to Feature Distinguished Speakers Discussing a New Era of Patient-Focused Innovation

Posted by Christina Jensen

Washington, D.C., August 29, 2018 – The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, has announced some of the speakers confirmed for the 2018 NORD Rare Diseases & Orphan Products Breakthrough Summit, to be held October 15-16 in Washington, D.C…. Read More

Tags: FDA, Food and Drug Administration, NIH, NORD Rare Summit, NORD Summit, Peter L. Saltonstall, Rare Diseases & Orphan Products Breakthrough Summit, Rare Summit

August 23, 2018

TOPIC: Patients & Members

Fibrolamella Cancer Foundation Thanks NORD for Help with SSA Compassionate Allowance Listing

Posted by Christina Jensen

The following is a guest blog post from John Hopper, President of the Fibrolamellar Cancer Foundation, a NORD Member Organization.

Huge thanks to NORD leadership! Fibrolamellar Cancer was just approved as one of the Social Security Administration Compassionate Allowance diseases. Why? Because great people like Mary Dunkle and Paul Melmeyer knew this was… Read More

Tags: compassionate allowances, Fibrolamellar Cancer, Fibrolamellar Cancer Foundation, Mary Dunkle, NCATS, NIH, Paul Melmyer, rare cancer, rare disease, Social Security Administration, ssa

August 15, 2018

TOPIC: Featured News, Patient Stories, Press Releases

Healthline and NORD Announce Recipients of 2018 Stronger Scholarships

Posted by Laura Mullen

Washington, D.C., August 15, 2018 – The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, and Healthline Media, the second largest health information site with 90 million monthly visitors, have announced the recipients of the 2018 Healthline and NORD Stronger Scholarships. The program’s goal… Read More

Tags: chronic disease, Daniel Stanley, Dravet Syndrome, Dravet Syndrome Foundation, Fanconi Anemia, Fanconi Anemia Research Fund, Gastroschisis, Healthline, Lewis & Clark College, Matthew Pearl, National Marrow Donor Foundation, NORD, rare disease, Rice University, Sanika Rane, Simran Handa, Stronger Scholarship, Ulcerative Colitis, University of Wyoming, Westminster College

August 9, 2018

TOPIC: Events, Featured News, Get Involved

Join us at the 2018 NORD Rare Summit

Posted by Christina Jensen

Dear Reader,

I want to invite you to join me and 700 others from the rare disease community at our annual Summit. This year, NORD’s 2018 Rare Diseases and Orphan Products Breakthrough Summit will take place October 15-16 in Washington, D.C.

We expect this year’s Summit to again be the single most important gathering of the rare disease community…. Read More

Tags: Dr. Scott Gottlieb, FDA, FDA Commissioner, NORD Rare Summit, NORD Summit, Patient-Focused Drug Development, Peter L. Saltonstall, Rare Diseases and Orphan Products Breakthrough Summit

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September 5, 2018

Patient/Caregiver Opening Address Announced for NORD Rare Summit

Posted by Laura Mullen

August 29, 2018

2018 NORD Rare Summit to Feature Distinguished Speakers Discussing a New Era of Patient-Focused Innovation

Posted by Christina Jensen

August 15, 2018

Healthline and NORD Announce Recipients of 2018 Stronger Scholarships

Posted by Laura Mullen

August 9, 2018

Join us at the 2018 NORD Rare Summit

Posted by Christina Jensen

Topics

Alone we are rare. Together we are strong.®