Cystinosis Research Network

09/03/2026

“The two factors that I find the hardest [on peritoneal dialysis] are, first, the unclear future, and second, travel restrictions. I could leave the country in theory, but as I’m on the deceased kidney donor waiting list, I would be suspended when I did. I would be rigid with anxiety anyway.”

Thanks, Joe for a glimpse into the uncertainties that come with peritoneal dialysis and waiting for a kidney transplant.

https://tinyurl.com/284n89st

RARE Revolution Magazine

08/25/2026

Thank you to registered donors, organ, eye and tissue donors, living donors, and donor families. Your lifesaving generosity makes more first days of school possible! 🍎💻📚 Share your photos with us in the comments! 💙💚 Register your lifesaving decision to be an organ, eye and tissue donor at RegisterMe.org

08/23/2026

Congrats to you, Stella!

"Stella understands that she has different needs and experiences than many other children, but she is still just a kid who wants to have fun, make friends, be included, and feel like she belongs. Team IMPACT has given her the opportunity to simply be a kid and be part of something bigger than herself."

https://utrockets.com/news/2026/8/19/womens-volleyball-stella-miller-signs-with-toledo-volleyball-through-team-impact

9-year-old Ohio native matched with the Rockets for next two years

08/19/2026

Navigating Cystinosis + School
If you have a child entering elementary school and have decided you’d like to share some information with their class, this resource may help. Two presentations are available on our website, appropriate for grades 1 and 3. You are welcome to download and customize as you see fit. (Link in comments)

Good luck to our warriors headed back this year!

08/19/2026

Rare disease care is changing every day. Join NORD on Thursday, Aug. 27, from 3-4 p.m. ET for a "Living Rare, Living Stronger" webinar on improving your or your loved one's care.

Learn from experts from NORD and our Rare Disease Centers of Excellence Emory University School of Medicine, Cleveland Clinic, and Ann & Robert H. Lurie Children's Hospital of Chicago, along with patient advocate Jessica Contreras.

Have questions? Submit them when you register and join us for a live Q&A! If you can’t attend live, everyone who registers will receive the recording.

Register here: https://bit.ly/3UijVyX

Spread the word to those who could benefit from this free event!

08/17/2026

“What we give doesn't always return, but what we give is always what we are.”

On National Nonprofit Day, we’re celebrating the people who help make CRN possible.

If one of these faces has ever offered a listening ear, shared an experience, or helped you feel a little less alone, we’d love to hear about it. Let’s lift them up and celebrate the difference their time and support make.

08/14/2026

*Update - thank you for the responses. The survey is now closed*

Have 15 minutes?

The CRN is sharing a research survey from Beacon Consulting Group focused on your real-world experience with cystinosis and eye care.

- Open to U.S. and Canadian residents
- Feedback remains confidential
- Receive a $30 gift card
- If interested, check out the link in comments

08/13/2026

Did you know today is World Organ Donation Day?

If you’ve ever considered being a living donor, it is a great day to learn more.

One donor can change a life. This World Organ Donation Day, we raise awareness about the importance of organ donation. and its power to give people with kidney failure a second chance at life through transplantation.

08/11/2026

Today is Cystinosis Talk Tuesday.
Please join us via Zoom at 8p ET / 7p CT / 5p PT

Host: Chelsea Meschke
🔗Link in comments