Zoom Night - January
2026-01-15 19:30 - 20:30 UTC
Cystinosis Community Zoom Night
Thursday, January 15 at 7:30 PM ET
Zoom link: https://us06web.zoom.us/j/88075560653
Join our next Zoom night for an evening of connection and conversation. These calls are open to everyone living with and impacted by cystinosis, however, this call will focus on new/newer diagnosed families. It’s a welcoming space to share experiences, ask questions, and simply spend time together.
Hosted by Chelsea Meschke, CRN Vice President of Family Support, licensed social worker, and mom to two cystinosis warriors.
See you there!

Rare Disease Day 2026
2026-02-28
Taking place on the last day of February, Rare Disease Day is a global movement which aims to promote equity in social opportunities, healthcare, and access to diagnosis and therapies for individuals living with rare diseases.
If you are looking for cystinosis awareness opportunities, you’ve come to the right place. Here are some ideas:

Share Your Story

Through partnership with Everylife Foundation, share your experience focusing on this question: How has rare disease has affected your and your family’s lives? Submit online here.

Faces of Rare

Similar to the option above, join NORD in celebrating the “Faces of Rare.” Providing a photo and a small glimpse into your rare disease story on their website.

Rare Disease Week in Washington, D.C.

Advocate during Rare Disease Week on Capitol Hill (email info@cystinosis.org if interested in sponsorship)

Local Rare Disease Day Events

Can’t make it to Washington, D.C.? Do a quick search for Rare Disease Day events near you. Check out NORD’s list here.

Call for Rare Youth Leaders

Teens and young adults looking to take a rare leadership role, contact the CRN before March 8th. Opportunities open to those with a personal connection to rare ages 18-30. Email info@cystinosis.org

Why should I care about Rare Disease Day?

Learn about Rare Disease Day and sharing the importance of this event with friends, family and your extended networks. Access the official Rare Disease Day info pack and video today

Zoom Night - March
2026-03-10 19:00 - 20:00 | 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 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.
This year we focus on one question: What’s your 57?
And here is a sample of ways you can take part:
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 around the world to share theirs. Add your voice here.
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).
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.
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.
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.
Honor our 2,000+ warriors in the most meaningful way to you this Cystinosis Awareness Day.
The donation campaign is now open. Use our secure, tax-deductible form to contribute 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.
