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PATIENT STORIES

Boy with DMD Finishes his 11th Flying Pig Marathon

May 12, 2022
cystinosis

Living With Cystinosis: Oscar’s Patient Story, Part Three

May 11, 2022
cystinosis

Living With Cystinosis: Oscar’s Patient Story, Part Two

May 10, 2022
GRIN disorder

2022 GRI Virtual Conference: Family Presentations

May 10, 2022

Patient Turns Struggles into Guided Journal to Help Others

May 10, 2022
cystinosis

Living With Cystinosis: Oscar’s Patient Story, Part One

May 9, 2022

Artist Spreads Usher Syndrome Awareness

May 5, 2022

The Latest Webinar from NORD Showcases the Rare Disease Patient Experience

May 5, 2022

Woman with Moebius Syndrome Signs International Modeling Contract

May 3, 2022

Students with Friedreich Ataxia Work to Cure It

May 3, 2022

Cosmic Fate

May 2, 2022
cystic fibrosis surgery

Patient Stories: A1AD Patients Reunite with Transplant Surgeon

April 29, 2022
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We believe rare disease patients are people, not a diagnosis. Through education, awareness and some humor, we help patients, caregivers and support persons by providing relevant and often inspirational news and stories.
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