Rare Disease Day 2025
Rare Disease Day is February 28, 2025. It is an opportunity to raise awareness and generate change for the 300 million people worldwide living with a rare disease, their families […]
10 events found.
Gatherings/Conferences
Events
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Family Zoom Night – March
Virtual EventJoin us this March as Family Zoom Night returns! This welcoming space is open to anyone impacted by cystinosis to share experiences, ask questions, and connect with others. Led by […]
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Cystinosis Awareness Day 2025
Now in it's eighth year, Cystinosis Awareness Day was created to shine a spotlight on our rare disease. Spreading information about cystinosis has the power to create a better future […]
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2025 CRN Family Conference
Amway Grand 187 Monroe Ave NW, Grand Rapids, United States -
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Zoom Night – September
ZoomVirtual EventWe’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 […]
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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 to everyone living with and impacted by cystinosis, however, this call will focus on new/newer diagnosed families. It’s a welcoming space to share experiences, ask […]
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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 Family Meetup is an intimate gathering designed to connect, inform and strengthen our cystinosis community. Hosted by Chelsea Meschke, LMSW, CRN VP of Family Support […]
$20
