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1 in 10 Californians with Rare Disease are One Step Closer to Having their Voices Heard in State Government; NORD Advocates Testify and Help the Rare Disease Advisory Council Bill Advance to Appropriations – National Organization for Rare Disorders
SACRAMENTO, CA, April 24, 2024—Today, California is one step closer to establishing a Rare Disease Advisory Council (RDAC) to help the 1-in-10 Californians
Rare Impact Awards – NORD’s Rare Impact Awards
This very special event will celebrate NORD’s legacy and achievements, and honor those individuals and organizations doing remarkable work on behalf of the rare disease…
Rare Impact Awards – NORD’s Rare Impact Awards
This very special event will celebrate NORD’s legacy and achievements, and honor those individuals and organizations doing remarkable work on behalf of the rare disease…
Genetic Testing for Rare and Undiagnosed Disorders
About 85% of rare disorders are genetic. Watch this video, produced by the National Organization for Rare Disorders, to understand the what, when, why, and…
Community Spotlight – Ilona Williams
Ilona Williams joined Lydia Dubose of SRNA to discuss her journey with neuromyelitis optica spectrum disorder (NMOSD).
Living Rare Living Stronger – Rare Disease Patient Event
The Living Rare, Living Stronger NORD Patient and Family Forum will be a truly patient first event. Through it all, we will maintain our objectives:…
From Runner to Running for Rare Coach: Bill’s Story in Honor of National Volunteer Month – National Organization for Rare Disorders
Before becoming a NORD Running for Rare coach, I was a runner for over 30 years chasing my own goals, and a coach for 10 years…
UMDF Conference
Each year, UMDF’s Mitochondrial Medicine Conference brings together the best minds in mitochondrial medicine and the patients we serve. With over 700 attendees representing almost…
Rare Impact Awards – NORD’s Rare Impact Awards
This very special event will celebrate NORD’s legacy and achievements, and honor those individuals and organizations doing remarkable work on behalf of the rare disease…