To Top

September 20, 2018

TOPIC: Events, Featured News, Get Involved

Chat, Chew, and Be Challenged! Lunchtime Learning at the NORD Rare Summit

Posted by Christina Jensen

Make your choice from this menu of thought-provoking, informative Lunch & Learn sessions available for attendees of the 2018 NORD Rare Summit. With only 25 days to go, be sure to save your seat at the table by registering for the Summit and choosing your lunch option now! Lunch & Learn sessions have limited seating and will be first-come,… 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 by Christina Jensen
Read More

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