Registration for the Cystinosis Network Europe (CNE) International Conference, hosted by Cystinosis Foundation UK in Manchester in July are now open! Register here. Scientific meeting agenda Family meeting agenda CNE […]
For Disability Pride Month, the Adult Leadership Advisory Board is hosting a Zoom call to discuss living with cystinosis and disability. Their special guest is Hannah Creel, a cystinosis warrior, […]
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 […]
CRN 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 […]
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 and carers. Rare Disease Day Official launched a video to support the cause which you can view here. The 2025 theme: More than you can […]
Join 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 […]
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 for the ~2,000 diagnosed and those awaiting a diagnosis. How will you celebrate May 7th? There are many ways to show your support. Be Seen, […]
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 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 […]
Join 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 […]