Rare as One Project
October 1, 2024
Our Rare Disease Network goes global
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Rare as One Project
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Rare as One Project
June 13, 2023
Finding rare disease treatments: 2 patient leaders share their stories
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Rare as One Project
February 23, 2023
Lafora disease: A ‘particularly cruel’ form of epilepsy
Khari McCrary had her first seizure when she was 12 years old. At first, she was diagnosed with epilepsy. But two years later, her seizures turned more severe and she started having multiple in a day. After a week of testing in a hospital, she finally ...
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Rare as One Project
February 8, 2023
How patients with rare diseases are accelerating groundbreaking research for their communities
Kim Nye spent a decade traveling the world seeking a diagnosis for her daughter, Tessa, who was having more than 100 seizures daily. When Kim gave birth to her son, Colton, he began having seizures shortly after birth, just like his sister. By examining the ...
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Pete Farley
Director of Communications
Julie Chao
Science Communications Manager
GET BIOHUB UPDATES IN YOUR INBOX
Follow Us
For media inquiries, please contact us at media@czbiohub.org
Pete Farley
Director of Communications
Julie Chao
Science Communications Manager
