Cystinosis Research Network

10/08/2026

Agree or disagree?

If it's out of your hands, it should be free from your mind, too.

10/08/2026

Where are our cystinosis warriors searching for a remote, part-time job?

RARE Foundation (formerly EveryLife Foundation for Rare Diseases) is looking for a Communications Assistant. You could be their next intern!

Info at https://tinyurl.com/bd63479h

The RARE Foundation Is Hiring a Communications Assistant!

Join our dedicated team in making a meaningful difference in the lives of more than 30 million Americans living with rare diseases.

At the RARE Foundation, we are committed to improving the lives of people and families affected by more than 10,000 known rare diseases through science, policy, and advocacy.

We’re currently looking for a Communications Assistant to join our team and support our communications efforts. If you or someone you know may be interested, please share this opportunity or visit our website to apply! https://hubs.li/Q04zyXcs0

10/06/2026

See you at 8pm eastern!
(Zoom link in comments)

10/05/2026

Tues, October 6
8p et / 7p ct / 5p pt
Cystinosis and Aging

Join co-hosts Cheryl and Hannah for a live discussion. Zoom link is in the comments.

We hope to see you there!

09/29/2026

“Rare doesn’t mean less important. It means not enough people know about it.” -Gail Devers

Global Genes

09/28/2026

Rounding out our 2026 awardees is Miss Jordan.
This sibling scholarship recipient is pursuing a Masters in Forensic and Investigative Sciences.

Way to go, Jordan!

09/25/2026

Our next scholarship awardee is Tessa. She has earned a Sierra Woodward Sibling Scholarship to attend Bradley University.

09/24/2026

Please join us in congratulating Josie - this year's Deanna Lynn Potts Scholarship recipient.

Best of luck to all returning students!