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October 9, 2018

TOPIC: Featured News, Patients & Members, Press Releases, Research

NORD IAMRARE HI Global Registry Launched

Posted at October 10, 2018 10:51 am by Christina Jensen

Yesterday, a NORD Member Organization and IAMRARE™ Registry Client, Congenital Hyperinsulinism International (CHI), officially launched their patient registry, HI Global Registry. NORD’s IAMRARE Registry Program was built to address the special needs of those developing treatments for rare diseases with extensive input from FDA, NIH, patients, organizations and experts in the field. We are pleased… Read More

October 3, 2018

TOPIC: Featured News, Press Releases, Research, Sticky Posts for Homepage

Five Years of Patient Registry Success: NORD’s IAMRARE™ Registry Program Celebrates New Partnerships and Models of Engagement  

Posted at October 10, 2018 09:21 am by Laura Mullen

Washington, D.C., October 3, 2018—The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, today is celebrating five years of patient registry success with the announcement of a new multi-stakeholder model of engagement in collaboration with the Foundation for Prader-Willi Research and Zafgen, Inc.

 

In the rare disease space, with… Read More

September 12, 2018

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

Three Big Reasons Not to Miss the 2018 NORD Rare Summit

Posted at September 9, 2018 04:35 pm by Christina Jensen
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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 at September 9, 2018 10:23 am 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

July 26, 2018

TOPIC: Patient Stories, Research

Giving Spotlight:  Honoring Mom-Mom’s Legacy with Research and Awareness

Posted at July 7, 2018 08:00 am by Jennifer Huron

 Editor’s Note: During the week of July 23-27, 2018, NORD featured pheochromocytoma as the Rare Disease of the Week in order to raise awareness for this rare type of cancer. The blog post below was written in November 2015, sharing the story of the Yankanich family who has been raising money for Pheochromocytoma research with NORD. After losing… Read More