Tag: rare disease

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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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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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CRN Welcomes New Board Members

The Cystinosis Research Network announces the expansion of our Board with two new Directors. Their experience, perspectives and dedication...

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Cystinosis Awareness Day

On May 7, 2023 the cystinosis community will come together in honor of Cystinosis Awareness Day (CAD). Now in...

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Cystinosis Mexico Hosts 2nd Medical Training

San Miguel de Allende, Mexico was the setting for Cystinosis Mexico’s training course August 26 – 28. Nephrologists, ophthalmologists...

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CNE Conference Recordings

The organization of the 3rd Cystinosis Network Europe (CNE) International Cystinosis Conference would like to offer all interested parties...

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In Memoriam: Dr. Jerry Schneider

This past winter we lost a revolutionary in the cystinosis world, Dr. Jerry Schneider. During his time at the...

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AVROBIO Reports Positive Data From Phase 1/2 Clinical Trial of Investigational Gene Therapy for Cystinosis, Including New Interim Data on Neurocognitive Measures

Press release originally published May 17, 2022 on Avrobio.com. New early data show key visual motor integration, visual perception...

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