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September 11, 2018

TOPIC: Featured News, Press Releases, Research

NORD Announces Ten New Rare Disease Registries, Thanks to Multi-Year Grant from Shire

Posted by Laura Mullen

Washington, D.C., September 11, 2018—The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, has announced the addition of ten new rare disease registries, made possible through a multi-year grant award from Shire.

NORD’s IAMRARETM Registry Program provides a web-based tool to collect patient experience and patient-reported outcomes data across… Read More

September 6, 2018

TOPIC: Featured News

NORD 35th Anniversary Blog Series: 2010-2018 (Present)

Posted by Jennifer Huron

2018 is a big year for the rare disease community – NORD is celebrating its 35th anniversary.  For the past 35 years, NORD has taken pride in being the rare disease community’s biggest advocate.  Our policy, research and other efforts have played a significant role over the years, advocating for what matters most… Read More

September 5, 2018

TOPIC: Events, Featured News

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

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

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