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March 15, 2022

TOPIC: Press Releases

Honoring the Rock Stars of the Rare Disease Community: NORD Announces the 2022 Rare Impact Award Honorees

Posted by Rohan Narayanan

NORD’s Rare Impact Award ceremony on June 26 will honor all those making strides to improve the lives of patients and families in the rare disease community 

Cleveland, OH, March 15, 2022—Today, the National Organization for Rare Disorders (NORD®) announced the 2022 Rare Impact Award honorees. This list of outstanding individuals, organizations and industry innovators will… Read More

March 11, 2022

TOPIC: Advocacy

FDA’s Accelerated Approval Pathway: A Rare Disease Perspective

Posted by Valaree DonFrancesco

Accelerated approval is critical to providing access to new, safe, and effective drugs to patients with serious and life-threatening diseases and conditions for which there are no meaningful alternatives. Learn more about the history of accelerated approval, how its use has benefited rare disease patients, and recommendations for strengthening the accelerated approval pathway by clicking here.

March 3, 2022

TOPIC: Press Releases

Navigating Diversity, Equity and Inclusion in Rare Disease Nonprofits

Posted by Rohan Narayanan

NORD Releases New Toolkit to Inform and Guide Patient Advocacy Groups to Improve and Prioritize Equity and Accessibility in the Rare Disease Community 

Washington, DC, March 3, 2022— Today, the National Organization for Rare… Read More

February 28, 2022

TOPIC: Patient Stories, Rare Disease Day

Scleroderma and Horses: Whitney’s Rare Disease Day Story

Posted by Julie Ostroff
Girl in red hat looking at white horse.

From the time I was three years old, my life has centered around horses. When I was diagnosed with my rare disease, diffuse scleroderma, my first thought was “will I still be able to ride?” I was 28 years old, had the horse of my dreams, and was terrified that everything was about to change. Little did I know,… Read More

February 28, 2022

TOPIC: Patient Stories, Rare Disease Day

Rare Disease Day 2022: Grace’s Story

Posted by Julie Ostroff

I am a 16-year-old pediatric patient who has been struggling with Sjögren’s for years.

There are so many ways my condition has affected my life in both bad and surprisingly good ways. On one hand, sometimes my day-to-day life can be hard. It’s difficult to be the only one of your friends who isn’t playing sports or isn’t attending… Read More