The CRN Family Conference is back...and in-person for the summer of 2023. Join us July 13 - July 15 in Nashville, Tennessee. The event will take place at the Nashville Marriott at Vanderbilt University. For agenda, travel scholarships and more details, click here. We look forward to seeing you there!
See you in Cincinnati, Ohio! On May 4th, we are gathering for an in-person meet-up at the Cincinnati Marriott River Center. Join us for a day of connection, education, and celebration commemorating the 7th Annual Cystinosis Awareness Day. Registration is required and is now closed. Please contact Chelsea with questions at chelseam@cystinosis.org. Draft Agenda 8:30a […]
Join us on and leading up to May 7th to promote cystinosis awareness, education and fundraising efforts. Our 7th annual awareness day campaign focuses on #CystinosisStereotypes with 3 ways go participate: share, create and/or donate. Share. Each day our community wakes up and challenges cystinosis stereotypes. Over the next few weeks we will be releasing […]
A new school year is almost here. If you are preparing to send a child with cystinosis into the classroom, this meeting is for you! Join the Zoom call Monday, July 22 at 7pm ET.We will discuss- Individual Education Plans (IEPs) - 504 plans - Medication schedules- Overall support strategies ...and more No registration needed. […]
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 Heckman, a licensed therapist from Seattle, Washington. Register here to take part in the discussion.
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 […]
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 […]