Rare Disease Day 2026
Taking place on the last day of February, Rare Disease Day is a global movement which aims to promote equity in social opportunities, healthcare, and access to diagnosis and therapies […]
10 events found.
Events
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Zoom Night – March
ZoomJoin us for our March Zoom call, where we’ll be coming together to talk about kidney transplants. For many in the cystinosis community, the journey includes at least one (if […]
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2026 CRN Regional Family Meetup
Hyatt Place St Johns Town Center 4742 Town Center Parkway, Jacksonville, FL, United StatesFamily and friends within driving distance of Jacksonville, Florida, do not want to miss this event! Open to those living with cystinosis and their loved ones, the 2026 CRN Regional […]
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Cystinosis Awareness Day 2026
This year marks the 9th Annual Cystinosis Awareness Day. Inspired by the 57kb deletion in the CTNS gene, the most common cause of nephropathic cystinosis, the day has grown into […]
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Family Zoom Night – June
What’s on your mind? Let’s talk! Join us on Tuesday, June 23rd for a Cystinosis Zoom Night. This is a welcome space open to everyone impacted by cystinosis. We will […]
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2026 Cystinosis Network Europe International Conference
Royal Marine Hotel, Dun Laoghaire Dublin, IrelandCystinosis Ireland hosts the Cystinosis Network Europe's International Conference on July 3, 2026. The Dublin event offers scientific and family sessions, child care, time for socialization and translation for seven […]
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August Zoom Call
August cystinosis Zoom call discussions will be shaped by your questions and priorities. Chelsea Meschke, VP of Family Support, is our host on August 11 at 8p ET / 7p […]
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October Zoom Night – Cystinosis and Aging
Virtual EventAging with cystinosis brings new questions, challenges, and experiences. Co-hosts Cheryl and Hannah (living with cystinosis) will dive into topics inspired by ongoing conversations happening now across the cystinosis community. […]
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2026 CRN Scientific Symposium
Weber's Hotel Ann Arbor, MI 3050 Jackson Avenue, Ann Arbor, MI, United StatesAdvancing the Future of Cystinosis Care. The CRN Scientific Symposium brings together physicians, clinicians, researchers, and scientists for a peer-to-peer exploration of emerging developments in cystinosis and lysosomal storage disorders. […]
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2027 CRN Family Conference
Charlotte Marriott City Center 100 West Trade Street, Charlotte, NC, United StatesJoin us in the heart of Uptown Charlotte. CRN Family Conferences draw some of the largest gatherings of cystinosis families in the world. The weekend-long agenda creates a space for […]
