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March 3, 2020

TOPIC: Patients & Members, Events, Get Involved

NORD Announces Sing Me a Story Raffle for Upcoming Living Rare, Living Stronger Patient and Family Forum

Posted at March 3, 2020 08:00 am by Valaree DonFrancesco

NORD is proud to welcome Sing Me a Story to the upcoming 2020 Living Rare, Living Stronger Forum in Cleveland, Ohio, where the ideas of children living with rare diseases will be turned into song! This opportunity is supported by Horizon Therapeutics’ #RAREis program.

NORD will spotlight one… Read More

February 11, 2020

TOPIC: Press Releases, Featured News, Events

NORD Introduces This Year’s Rare Disease-Fighting Super Group: The 2020 Rare Impact Award Honorees!

Posted at February 2, 2020 10:17 am by Laura Mullen

Washington, DC, February 11, 2020—The National Organization for Rare Disorders (NORD®) has announced this year’s roster of rare disease change-makers, the 2020 Rare Impact Award honorees. These exceptional individuals, organizations and industry innovators will be honored for their outstanding work for the rare disease community on May 15, 2020, in Cleveland, Ohio. The 2020 Rare Impact Awards program will… Read More

November 12, 2019

TOPIC: Featured News, Events

Reflections of a First Time NORD Summit Attendee: Matthew’s Story

Posted at November 11, 2019 02:02 pm by Laura Mullen

I attended the NORD 2019 Summit in Washington, DC a few weeks ago. It was my first chance to attend this conference organized by the National Organization for Rare Disorders and, admittedly, the first time I considered going. I had the impression that NORD was a policy and advocacy meeting (it was) with limited discussions on technical and… Read More

October 29, 2019

TOPIC: Featured News, Advocacy, Events

NORD’s Rare Action Network Mobilized for a Successful Hill Day

Posted at October 10, 2019 05:58 pm by Laura Mullen

On the heels of the 2019 Rare Diseases and Orphan Products Breakthrough Summit, NORD’s Rare Action Network (RAN) Volunteer State Ambassadors made their way to Capitol Hill on October 23, 2019, to tell their stories and show their stripes. Ambassadors from 20 states met with 30 congressional offices to talk about a… Read More

October 23, 2019

TOPIC: Featured News, Events

2019 NORD Summit Breaks Records with Largest Attendance Ever!

Posted at October 10, 2019 02:13 pm by Laura Mullen
Health and Human Services Secretary Alex Azar

Health and Human Services Secretary Alex Azar speaking at the NORD Summit on October 22, 2019


Washington, DC, October 23, 2019–Earlier this week, the National Organization for Rare DisordersⓇ (NORD) broke previous records with its 2019 Rare Diseases & Orphan Products Breakthrough Summit, welcoming over 900 registrants to two days of… Read More