Zoom Night – September
Virtual Event
We’re keeping it simple with no agenda, no pressure. This call is open to everyone living with and impacted by cystinosis. It is a chance to connect, ask questions, and […]
10 events found.
Gatherings/Conferences
Events
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Zoom
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Zoom night – November
ZoomJoin our next Zoom night on Tuesday, November 18th. Calls are open to everyone living with and impacted by cystinosis. It is a chance to connect, ask questions, and spend […]
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Zoom Night – January
Cystinosis Community Zoom Night Thursday, January 15 at 7:30 PM ET Zoom link: https://us06web.zoom.us/j/88075560653 Join our next Zoom night for an evening of connection and conversation. These calls are open […]
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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 for individuals living with rare diseases. If you are looking for cystinosis awareness opportunities, you've come to the right place. Here are some ideas: Share […]
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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 not multiple) kidney transplants. This open, supportive conversation will explore life before transplant, dialysis, re-transplantation, and the realities in between. With voices from across the […]
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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 a global moment of recognition, awareness, and action. Join us in answering... What's your 57? Ways to participate: 57 voices What’s your 57? The reason […]
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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 different languages. For details, go to https://www.cystinosis-europe.eu.
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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 […]
