Cystinosis Research Network

2025 CRN Family Conference
2025-07-11 - 2025-07-13 | Amway Grand, 187 Monroe Ave NW, Grand Rapids, 49503, United States

Zoom Night - September
2025-09-16 19:30 - 20:30 UTC | Zoom
We’re keeping it simple with no agenda, no pressure. This call is open to everyone living with and impacted by cystinosis. It is a chance to connect, ask questions, and spend time together.

September 16
7:30p ET
Zoom https://tinyurl.com/yy3v7euh

Our host is Chelsea Meschke, CRN VP of Family Support, licensed social worker, and mom to two cystinosis warriors.
We hope to see you there!

Zoom night - November
2025-11-18 19:30 - 20:30 | Zoom
Join our next Zoom night on Tuesday, November 18th.
Calls are open to everyone living with and impacted by cystinosis. It is a chance to connect, ask questions, and spend time together.

November 18
7:30p ET
Zoom link: https://tinyurl.com/7s2datft

Our host is Chelsea Meschke, CRN VP of Family Support, licensed social worker, and mom to two cystinosis warriors.
We hope to see you there!

Zoom Night - January
2026-01-15 19:30 - 20:30 | FL
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 | FL
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 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.
