10 events found.
Events
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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 spend time together. September 16 7:30p ET Zoom https://tinyurl.com/yy3v7euh Our host is Chelsea Meschke, CRN VP of Family Support, licensed social worker, and mom to two […]
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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 time together. November 18 7:30p ET Zoom link: https://tinyurl.com/7s2datft Our host is Chelsea Meschke, CRN VP of Family Support, licensed social worker, and mom to […]
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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 […]
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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 share what is troubling us, celebrate our wins, ask questions, and most importantly, connect with others. June 23, 2026 7:00pm Eastern Host: Chelsea Meschke, VP […]
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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.
