Zoom Night - March
2026-03-10 19:00 - 20:00 UTC | Zoom
Join us for our March Zoom call, where we’ll be coming together to talk about kidney transplants.
For many in the cystinosis community, the journey includes at least one (if not multiple) kidney transplants. This open, supportive conversation will explore life before transplant, dialysis, re-transplantation, and the realities in between.
With voices from across the community, this call offers a chance to learn from one another, ask questions, and feel more prepared for what may lie ahead no matter where you are today.

Tuesday March 10
7:00 pm et / 6:00 pm ct / 5:00 pm mt / 4:00 pm pt
Zoom meeting link: https://us06web.zoom.us/j/88412838095

CRN VP of Family Support, Chelsea Meschke will lead the event. Chelsea’s professional background is in social work and she is the caregiver of two young boys with cystinosis.

2026 CRN Regional Family Meetup
2026-05-02 08:30 - 17:00 | Hyatt Place St Johns Town Center, 4742 Town Center Parkway, Jacksonville, FL, 32246, United States
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 and proud mom of two cystinosis warriors, this special event creates space for meaningful conversation and cystinosis learning.
During this one day event, we are honored to welcome guest speaker Dr. Larry Greenbaum, MD, PhD. Dr. Greenbaum is a prominent pediatric nephrologist and Division Director at Emory University/Children’s Health of Atlanta. He is the Principal Investigator for the Emory site of the Cohort 0 clinical trial for CYStem gene therapy.
Registration covers:
– Admission for up to 4 people
– Free hotel parking
– Breakfast, lunch, snacks and beverages during the Sat, May 2 event
– Post-event mileage reimbursement from your home to the hotel (up to 150 miles roundtrip)
– Complimentary hotel stay on Fri, May 1st at the Hyatt Place Jacksonville/St. Johns Town Center (meetup begins Saturday morning). When you select the complimentary hotel stay, CRN will handle your reservation. Rooms default to a standard king bed with a sleeper sofa.
To attend, all (including children) need to be registered by April 14, 2026 and will be prioritized on a first come basis. Spots are limited.
Register here
For questions, email chelseam@cystinosis.org. See you in Jacksonville this May!

Cystinosis Awareness Day 2026
2026-05-07 | FL
Join the Cystinosis Awareness Day Movement!
Honor our 2,000+ warriors in the most meaningful way to you. Let’s educate, raise awareness and raise funds.
May 7th marks the 9th Annual Cystinosis Awareness Day (CAD). It started as a reference to the 57kb deletion in the CTNS gene, the most common genetic cause of nephropathic cystinosis. Since then, CAD has turned into a global day of recognition.
This year we ask – What is your 57?
It is a call to action that can be big or small; 57 reflective words about the disease or 57 friend and family contributions, 57 minutes of walking to 57 acts of kindness.
We encourage everyone to choose something meaningful they can share and spread the word. Every single action makes a difference in the fight against cystinosis.
How will you choose to honor this momentous occasion?
(To donate via our secure, tax-deductible form, click here)

2026 Cystinosis Network Europe International Conference
2026-07-03 - 2026-07-04 | Royal Marine Hotel, Dun Laoghaire, Dublin, Ireland
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.
