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Home | CanMPS Registry
Welcome to The Canadian MPS Registry website! This website has information about the patient registry and how to join.
Home | CanPKU Registry
Welcome to The Canadian PKU Registry website! This website has in formation on the patient registry and how to join. At this time, to be…
National Organization for Rare Disorders (NORD) Names Pamela K. Gavin as CEO; Peter L. Saltonstall Retires and Will Serve in Consultative Role – National Organization for Rare Disorders
QUINCY, MA, May 1, 2024—The National Organization for Rare Disorders (NORD) announced today that Pamela K. Gavin has been named CEO effective immediately. She
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:…
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…
Agenda – Living Rare Living Stronger
Check out the Living Rare, Living Stronger NORD Patient and Family Forum featuring the Rare Impact Awards agenda.
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