Cystinosis Research Network

2026 CRN Regional Family Meetup
2026-05-02 08:30 - 17:00 UTC | 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 will celebrate Cystinosis Awareness Day together. 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 7th, 2026.
For questions, email chelseam@cystinosis.org. See you in Jacksonville this May!
Registration is now closed. Thank you for your interest. Check our Awareness Day event for other ways to take part from home.

Cystinosis Awareness Day 2026
2026-05-07
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 that keeps you going. The moment that shaped you. The “why” behind your connection to the cystinosis community. We’re inviting 57 people from around the world to be featured in the awareness campaign. Amplify your voice here.
Show your 57
Change your social media profile image(s) to support Cystinosis Awareness Day. Download it here.
Get creative
Turn your “57” into a work of art; music, drawing, painting, photography, dance, theater, or crocheting, writing etc.
Give back
Ask 57 friends and family members to donate to the CRN using our secure, tax-deductible form.
Explain it
Create a short, simplistic explanation of cystinosis to bring up in conversation. Or you could text, email or call 5-7 people to talk about why awareness day is important to you.
Reflect
Journal your journey. Write 57 words about your relationship with cystinosis, or keep it simple and jot down how you are feeling today (share or keep it to yourself).
Stay informed
Spend 57 minutes reading the latest on cystinosis. Share one takeaway.
Acts of kindness
Complete 5-7 small acts. Every action makes a difference!
Connect
Located near Jacksonville, Florida? Join us in-person on May 2 to celebrate the day with our cystinosis families.
Simple actions can help others better understand this disease, drive earlier diagnosis and better care, generate stronger support, all in hopes of improving longterm outcomes. How will you choose to honor this momentous occasion? Share with us at info@cystinosis.org or tag us on social media.
We look forward to see how you choose to honor our 2,000+ warriors this Cystinosis Awareness Day.
Assets ready to download

Cystinosis Awareness Day flyer
Social media profile image

Family Zoom Night - June
2026-06-23 19:00 - 20:00
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 of Family Support
Join the Zoom call at https://tinyurl.com/m3emt2s7

If you have any questions, email Chelsea at chelseam@cystinosis.org. We look forward to seeing you then.

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.

2027 CRN Family Conference
2027-07-22 - 2027-07-24 | Charlotte Marriott City Center, 100 West Trade Street, Charlotte, NC, 28202, United States
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 send us a DM on social media with CLT2027 and your email address.
More details coming soon, be sure to check back as the program takes shape.
