Family 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 […]
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 […]
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 […]
Cystinosis 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.
August cystinosis Zoom call discussions will be shaped by your questions and priorities. Chelsea Meschke, VP of Family Support, is our host on August 11 at 8p ET / 7p CT / 5p PT. Use this direct link to join the meeting: https://tinyurl.com/mw2437j2
Aging with cystinosis brings new questions, challenges, and experiences. Co-hosts Cheryl and Hannah (living with cystinosis) will dive into topics inspired by ongoing conversations happening now across the cystinosis community. […]
The Cystinosis Research Network will host a Scientific Symposium in Ann Arbor, MI, bringing together researchers, clinicians, and various professionals interested in advancing cystinosis care. We are honored to welcome […]
Join us in the heart of Uptown Charlotte. CRN Family Conferences draw some of the largest gatherings of cystinosis families in the world. The weekend-long agenda creates a space for connection, learning, and shared experience for each member of the family. Save the dates! To stay informed about registration, scholarships, and updates, email info@cystinosis.org or […]