Tag: cystinosis

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Cystinosis Awareness Day

Join us on and leading up to May 7th to promote cystinosis awareness, education and fundraising efforts. More information...

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Rare Disease Day 2024

Check back for more information.

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UPDATE Eye Drop Research Seeking Participants

Healogix Market Research would like to hear from the cystinosis community. If you use *or have used* Cystadrops and...

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CRN 2023 Family Conference – Poster Session

Researchers, clinicians, industry and advocacy representatives attending CRN Nashville have been invited to exhibit research findings, treatment breakthroughs, and...

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Cystinosis + Raising Rare Podcast

Join us on the Raising Rare podcast featuring a young adult and caregiver living with cystinosis. The podcast episode...

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My Cystinosis Story by Gracie Smith

Hello! My name is Gracie, I’m 21 years old, and I have a rare disease called cystinosis. Cystinosis is...

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Informational Q&A: Cystinosis QoL Study

We will host an informational session on the CRN funded study “Development of a patient-reported outcome to measure the...

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Rare Disease Day: My Rare Journey

In recognition of Rare Disease Day 2023, the Adult Leadership Advisory Board compiled thoughts from a few cystinosis warriors....

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ISO a Hero on National Donor Day

By Julie Ayres, mom to Sierra Sierra is approaching a rather yucky milestone—one year on peritoneal kidney dialysis. We...

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William A. Gahl, MD, PhD to receive the 2023 Roscoe O. Brady Award

Dr. Gahl is the Director of the Undiagnosed Diseases Program, a Senior Investigator in the Medical Genetics Branch and...

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