Rare Disease News

Why I’m Running 40 Road Races for Rare Diseases This Year

Published March 17, 2023 by NORD

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Join Kasey Baker in running a local race or donate to her efforts to raise awareness and celebrate 40 years of NORD, here. After seeing the daily struggles of friends …

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The Celine Effect: Stiff Person Syndrome Gains a Powerful Voice

Published March 15, 2023 by NORD

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By Peter L. Saltonstall and Tara Zier For years, famed singer Céline Dion dealt with mysterious symptoms of severe muscle spasms and stiffening in her limbs that hampered her ability …

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Rare Rockstar Tira’s Story

Published March 10, 2023 by NORD

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By Catara C. Tira is a rockstar; she is constantly bringing so much joy and light to everyone surrounding us. To her, she’s no different than anyone else and treats …

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Rare Disease Day interview with NORD President and CEO Peter L. Saltonstall and Boston Children’s Hospital’s Dr. Olaf Bodamer

Published March 3, 2023 by NORD

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Watch CNBC’s Rare Disease Day interview with NORD President and CEO Peter L. Saltonstall and NORD Rare Disease Center of Excellence Director, Dr. Olaf Bodamer of Boston Children’s Hospital, where …

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NORD Commemorates Five Years of FDA Listening Sessions

Published March 2, 2023 by NORD

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Featured News

By Debbie Drell I’ve been a part of thousands of conference calls and virtual meetings during the course of my career. But while the details of many of those conversations …

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New Registry Creates a Platform for Sharing Information About Chondrosarcoma

Published March 1, 2023 by NORD

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Three years ago, Jeffrey Kramer made a promise to his daughter as she bravely battled the rare bone cancer Chondrosarcoma. Today, he is taking an important step in honoring that …

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Sparking Conversation: Nick’s Story in Honor of Rare Disease Day

Published February 28, 2023 by NORD

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Patient Stories

I’m a patient who has had an interesting history stemming from a neonatal stroke. I was born with a neonatal stroke that caused concerns for microcephaly, I was growth restricted, …

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Banding Together as Zebras: Merry’s Story in Honor of Rare Disease Day

Published February 28, 2023 by NORD

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Patient Stories

I’m the mama of two ladies who have autosomal recessive spastic ataxia of Charlevoix-Saguenay (ARSACS). We noticed symptoms at 5 years old with the first one. We went through extensive …

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NORD Announces 2023 Rare Impact Award Honorees and 40th Anniversary Celebration

Published February 27, 2023 by NORD

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May 4 Ceremony in Washington, DC will honor rare disease innovators, advocates, and partners as part of NORD’s 40th Anniversary Celebration Washington, DC, February 27, 2023—National Organization for Rare Disorders …

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The Privilege of Diagnosis and Treatment: Michelle’s Story in Honor of Rare Disease Day

Published February 27, 2023 by NORD

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Patient Stories

I was officially diagnosed with Stiff-person syndrome in 2017, but the onset of my disease was when I was 20. I was in college at the time and had to …

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