Adults August Meetup
The Adult Leadership Advisory Board invites you to join their August meetup on Monday the 26th at 6p ET. This month's topic: Mental Health - Trauma. Special guest is Kerry […]
10 events found.
Gatherings/Conferences
Events
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Family Zoom Night – February
Virtual EventCRN Family Zoom Night All are invited to attend a Family Zoom Night on February 11th. Our goal is to provide the cystinosis community with a safe place to share […]
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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 […]
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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 […]
