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July 6, 2022

TOPIC: Press Releases

NORD Statement on Dobbs v. Jackson

Posted by Rohan Narayanan

Washington, DC, July 6, 2022 – NORD was founded in 1983 with the mission of improving the lives of people living with rare diseases by expanding their access to critical and timely diagnostics, services, treatments, and cures. The ability of our community to access the appropriate medical procedures and care they need, when they need it, is of the utmost importance… Read More

June 30, 2022

TOPIC: Press Releases

NORD’s Living Rare Forum and Rare Impact Awards Highlight Powerful Patient Stories and Community Rock Stars

Posted by Rohan Narayanan

NORD’s patient centric conference showcased inspiring individuals, expert resources and presentations, and a festive celebration at the Rock and Roll Hall of Fame

Cleveland, OH, June 29, 2022 – This week, the National Organization for Rare Disorders (NORD®) hosted the Living Rare, Living Stronger NORD Patient and Family Forum, NORD’s annual family focused conference. 300 enthusiastic attendees from across the… Read More

June 24, 2022

TOPIC: Patient Stories

Giving Back to the Community: Suzy’s Rare Journey

Posted by Julie Ostroff
Suzy softly smiling in front of a blue background.

I am a rare disease patient who has lived with reflex sympathy dystrophy syndrome (RDS) and complex regional pain syndrome (CRPS) since 2007. In 2013, I was diagnosed with Ehlers-Danlos syndrome type IV, and in 2019, I had surgery for cholesteatoma. It is a benign auditory tumor that reoccurs 50% of the time. Life has been a challenge because… Read More

June 22, 2022

TOPIC: NORDPod

Season Finale: The FDA’s Dr. Kathleen Donohue and RDCA- DAP

Posted by Valaree DonFrancesco

Today on NORDpod, Andrew MacDowell stands in for Matthew Zachary, and he welcomes Dr. Kathleen Donohue, Director of the Division of Rare Diseases and Medical Genetics, at the FDA’s Office of New Drugs. Over 350 million people worldwide have a rare disease, yet only 10% of rare diseases have an FDA-approved… Read More