Author: cystinosisrn

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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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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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Free Spanish Translation Services

In partnership with Bromberg and Associates, cystinosis families now have access to free English/Spanish translation services. This includes, but...

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Pet Fundraiser Benefitting Adults with Cystinosis

The Adult Leadership Advisory Board (ALAB) created custom designed bandanas for your furry friends. Your donation provides support for...

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2023 Family Conference Theme Revealed

After four years without an in person meeting, we invite you to strap on your boots for a trip...

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Recruiting for Health-Related Quality of Life Study

Cystinosis patients and caregivers are invited to participate in a study focused on measuring health-related quality of life (HrQoL)....

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Seeking Volunteers for Male Fertility in Cystinosis Study

Men 18+ living with nephropathic cystinosis are currently being recruited for a research study, Clinical and Molecular Assessments of...

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