cystinosisrn – Page 3 – Cystinosis Research Network

Halloween Trivia Night

Celebrate Halloween from home this year. ALAB invites you to a free, online event that will test your spooky...

WORLDFair for Lysosomal Conditions

On October 21, 2023, the Advanced Therapies Program will host the 9th Annual WORLDFair. Open to both patients and...

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...

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...

Father’s Day Reflections: Finding Solace, Healing, and Strength at the Raregivers Men’s Retreat

By Jonathan Dicks, CRN President and VP Development I recently had the privilege of attending the three-night Raregivers Men’s...

Cystinosis + Raising Rare Podcast

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

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...

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....

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...

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...

Author: cystinosisrn