Cystinosis Research Network

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 - January
2026-01-15 19:30 - 20:30 UTC | 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!

Zoom night - November
2025-11-18 19:30 - 20:30 UTC | 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 - 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!

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

Cystinosis Awareness Day 2025
2025-05-07 | FL
Now in it’s eighth year, Cystinosis Awareness Day was created to shine a spotlight on our rare disease. Spreading information about cystinosis has the power to create a better future for the ~2,000 diagnosed and those awaiting a diagnosis. How will you celebrate May 7th?
There are many ways to show your support.

Be Seen, Flood It Green. Update your profile picture or simply save and share on your social channels the image provided here (or anything with a green theme) and #cystinosisaware. If you want to take it a step further, share a fact about cystinosis or share something you wish others knew

Ask Me Anything (AMA). AMA is a powerful way to raise awareness by connecting, sharing, and engaging by openly answering questions about a topic, like cystinosis. Leading up to awareness day we will provide these Q+A opportunities. If you’d like to pose a question or volunteer to provide answers, email info@cystinosis.org or comment on our socials

Double Your Donation Days. From May 1–15, 2025, every dollar you give to CRN will be matched—fueling twice the support for cystinosis research and programming. Make a tax-deductible contribution today
Visit our How to Help page for more

Family Zoom Night - March
2025-03-18 19:00 - 20:30 UTC | https://cystinosis.org/event/family-zoom-night-march/
Join us this March as Family Zoom Night returns! This welcoming space is open to anyone impacted by cystinosis to share experiences, ask questions, and connect with others. Led by our Vice President of Family Support, Chelsea Meschke.

March 18, 2025
7:00pm Eastern
For Zoom access, visit https://tinyurl.com/t6zek7b2

Email Chelsea with any questions at chelseam@cystinosis.org.

Rare Disease Day 2025
2025-02-28 | FL
Rare Disease Day is February 28, 2025.
It is an opportunity to raise awareness and generate change for the 300 million people worldwide living with a rare disease, their families and carers. Rare Disease Day Official launched a video to support the cause which you can view here.
The 2025 theme: More than you can image.
We are asking the cystinosis community to raise your voice and provide a glimpse into what life is like living with a rare disease. Our goal is to fill in the blank below and share with the broader community via social media and/or the CRN newsletter.

Living with cystinosis is more ___________ than you can imagine.
Send in your answer along with a photo or create a video expressing your thoughts. Email to info@cystinosis.org.

Other ways to be a part of Rare Disease Day 2025

US Residents – EveryLife Foundation for Rare Diseases created a petition to support steady and robust federal agency leadership, federal biomedical research funding, and public health agency support.

If this cause resonates with you, lend your voice by signing and sharing here.

On February 28, landmarks around the world will light up in Rare Disease Day colors. If you can, visit a lit-up landmark near you and take a photo! No landmark nearby? Light up your home with Rare Disease Day colors—purple, pink, green, and blue—and share a photo.
Share a Fact About Cystinosis. Raise awareness by posting a fact about cystinosis on social media or have a discussion within your circle of family, friends, schools, places of worship, etc. Not sure what to share? Visit our education section.
Connect and Advocate. Share your experience with cystinosis in an email, blog, or social post. Tag your representatives and ask them to support rare disease research and policies.
Get Creative. Write a poem, draw a picture, or create something that represents your cystinosis journey. Share it or send to us to showcase.

No matter how you choose to participate, your voice makes a difference!

Family Zoom Night - February
2025-02-11 18:30 - 19:30 UTC | https://cystinosis.org/event/family-zoom-night/
CRN Family Zoom Night
All are invited to attend a Family Zoom Night on February 11th. Our goal is to provide the cystinosis community with a safe place to share thoughts, express our feelings, and come together. Use this link to log into the meeting. We hope to see you there! Questions? Email Chelsea Meschke at chelseam@cystinosis.org.

Adults August Meetup
2024-08-26 18:00 - 19:00 UTC | FL
The Adult Leadership Advisory Board invites you to join their August meetup on Monday the 26th at 6p ET. This month’s topic: Mental Health – Trauma.
Special guest is Kerry Heckman, a licensed therapist from Seattle, Washington. Register here to take part in the discussion.

Adult July Meetup - Disability and Cystinosis
2024-07-29 15:00 - 16:00 UTC | Virtual
For Disability Pride Month, the Adult Leadership Advisory Board is hosting a Zoom call to discuss living with cystinosis and disability. Their special guest is Hannah Creel, a cystinosis warrior, advocate and rare disease ally.
Registration is free to attend the event on July 29 at 3pm ET/2pm CT.

Cystinosis Network Europe International Conference
2024-07-25 - 2024-07-27 | Manchester, England, Manchester, United Kingdom
Registration for the Cystinosis Network Europe (CNE) International Conference, hosted by Cystinosis Foundation UK in Manchester in July are now open!
Register here.
Scientific meeting agenda
Family meeting agenda

CNE is offering assistance to families who will find the financial burden of travelling very high. We are looking forward to an amazing family and community event in Manchester in the summer and hope to see you and your families there!

For questions, contact Denise Dunn at denise.dunne@cystinosis.ie.

School Prep + Cystinosis (virtual)
2024-07-22 19:00 - 20:30 (America/New_York) | FL
A new school year is almost here. If you are preparing to send a child with cystinosis into the classroom, this meeting is for you!
Join the Zoom call Monday, July 22 at 7pm ET.We will discuss– Individual Education Plans (IEPs) – 504 plans – Medication schedules– Overall support strategies …and more

No registration needed. Use this link when it is time for the meeting.
We hope to see you Monday night for an engaging conversation.

Cystinosis Symposium: A Rare Disease Model for Comprehensive Care
2024-05-31 07:45 - 19:15 UTC | The New York Academy of Medicine, 1216 5th Ave, New York, NY, 10029, United States
The CRN is hosting an in-person event for healthcare professionals.
Join us May 31, 2024 at The New York Academy of Medicine.
Healthcare providers with a desire to learn more about comprehensive care in rare disease are encouraged to attend. Registration includes meals, refreshments and cocktail hour. See the draft agenda and register below to secure your spot now for this pivotal event! See overview below.

Agenda

Register Today

Event Flyer

Speaker Bios

Overview
Review the latest advances in our understanding of cellular and molecular abnormalities in nephropathic cystinosis, which have led to three major breakthroughs. We’ll explore the implementation of effective treatments for interrupting disease progression from childhood to adulthood, and the exciting potential of cutting-edge gene therapies to eradicate this lifelong condition.

Despite these promising developments, substantial gaps and challenges persist in providing comprehensive care to cystinosis patients and families. Learn how earlier genetic recognition and timely diagnosis can make a difference. Find out how we’re bridging the gap to construct multidisciplinary healthcare teams extending from primary care to specialized support, including social work, nutritionists, educators, and quality of life navigators.

Be a part of this transformative conference, one of the first to address these glaring deficiencies in cystinosis care. Together, we’ll focus on themes that apply to healthcare providers, educators, and families, and work towards disseminating new information and raising awareness within the cystinosis community. Our ultimate goal is to provide an algorithm for more effectively navigating the promising future towards a cure.

A special thank you to our sponsors:

Adult May Meetup - Mental Wellness
2024-05-19 19:00 - 20:00 UTC | FL
May is Mental Health Awareness Month. Join the Adult Leadership Advisory Board to discuss the importance of mental wellness. Special guests include AJ Altman (Music Therapist) and Amanda Harmon (PhD college professor).

For the Zoom link, please register for free using this link.
Event is May 19 at 7p ET.

We hope to see you there!

Cystinosis Awareness Day
2024-05-07 | FL
Join us on and leading up to May 7th to promote cystinosis awareness, education and fundraising efforts.
Our 7th annual awareness day campaign focuses on #CystinosisStereotypes with 3 ways go participate: share, create and/or donate.

Share.

Each day our community wakes up and challenges cystinosis stereotypes. Over the next few weeks we will be releasing examples from global cystinosis warriors calling out those stereotypes through videos, photos and personal perspectives. Please share to help shatter #CystinosisStereotypes

Create.

Make your own video/post in response to the questions: What cystinosis stereotype are you breaking? Which do you wish to break? Once created, share with your network with #CystinosisStereotypes

Donate.

Your Cystinosis Awareness Day donations will be TRIPLED. $10 turns into $30, $100 into $300, and so on. Support cystinosis research, family assistance and educational programming today! The match will be capped at $15,000.

You may also be interested in:

Cincinnati, OH Family Meetup There will be an in person event for those regional to Cincinnati, Ohio on May 4th. Registration is complimentary and you can learn more here
For Your Healthcare Team The CRN is hosting an event at The New York Academy of Medicine to discuss comprehensive care in cystinosis. The May 31st symposium is for healthcare professionals. Please share the link with your care teams – they don’t want to miss this information-packed agenda
Special Programs Check out our robust support programming which includes the Cystinosis Warrior Impact Program. Apply yourself or nominate a loved one living with cystinosis
Adult Leadership Advisory Board Open to adults living with cystinosis 18+ years old, see the group’s current initiatives and apply to be a member here
Volunteer for Research Be a part of important advancements in the world of cystinosis. We are currently recruiting for the Quality of Life study and the full list is available on our webpage

Thank you to our sponsors:

Cystinosis Awareness Day - Family Meetup
2024-05-04 08:30 - 16:30 UTC | Cincinnati Marriott RiverCenter, 10 W Rivercenter Blvd, Covington, Kentucky, 41011, United States
See you in Cincinnati, Ohio!
On May 4th, we are gathering for an in-person meet-up at the Cincinnati Marriott River Center. Join us for a day of connection, education, and celebration commemorating the 7th Annual Cystinosis Awareness Day. Registration is required and is now closed. Please contact Chelsea with questions at chelseam@cystinosis.org.
Draft Agenda

8:30a Registration + breakfast provided
9:00a Welcome
9:30a Family introductions
10:15a Dr Elizabeth Ames, University of Michigan: Genetics in Cystinosis + Q&A
11:15a Group photo
11:30a Our Mental Health, with Chelsea Meschke, LMSW
12:00p Lunch provided
1:00p Updates from CRN President, Jonathan Dicks
1:30p Goose chase activity
2:30p Patient Support session
3:45p Closing remarks + departures

If you would like to stay at the venue overnight, discounted rates are secured through this booking link.
We hope to see you there! A special thank you our sponsors:

Family Planning with Cystinosis
2024-04-28 19:00 - 20:00 UTC | Virtual
The Adult Leadership Advisory Board introduces the topic of Family Planning with Cystinosis to their monthly meetup series.
Are you an adult with cystinosis thinking about having a family? Not sure if you want to adopt or pursue a traditional birth? Join the Zoom conversation to hear from adults with cystinosis who can help answer some of your questions. Special guests include Briana Dundon, Bryan and Alex Stout, and Emily Mello.
Click here to complete the simple event registration. Event will be held virtually on April 28th 6pm CT/ 7pm ET. We hope to see you there!

Rare Disease Day 2024
2024-02-29 | FL
By taking part in Rare Disease Day you help provide a greater understanding and acceptance of cystinosis and living with a rare disease. You may even find speaking out about cystinosis empowering. Either way, we thank you for being a part of our community and considering taking part in this important day. Here are a few examples of how to get involved:

Share your story with the official Rare Disease Day sponosors here
Sign up for Rare Disease Week on Capitol Hill in Washington, DC. Virtual sessions are also available
Talk with a friend, teacher or loved one about living with a rare disease. Resource materials can be found here including presentations for younger children
Get social; post something personal or leverage the Rare Disease Day Toolkit downloads to raise awareness
Join the Rare Action Network, Light Up for Rare or Show Your Stripes Campaigns lead by the National Organization for Rare Disorders (NORD)
Show support – for yourself or a loved one. The CRN provides special programming and assistance year-round. Discover what is available at no cost to you here
Participate in research. Check the Research tab for open studies including an online Quality of Life study currently looking for U.S. volunteers

Health Insurance - Online Q&A
2024-02-22 19:00 - 20:00 UTC | FL
CRN’s Adult Leadership Advisory Board will host a Q&A with Levi Peterson and Samantha Saver of Patients Rising. Tap into their experience navigating health insurance during this live session.
Register to join the Zoom call on February 22 @ 7pm ET using this link.

Halloween Trivia Night
2023-10-29 20:30 - 21:30 UTC | FL
Test your knowledge of everything Halloween.
ALAB members are hosting a free, online trivia night.
October 29th at 8:30pm ET
Jump on the Zoom call for a chance to win a $25 gift card. Open to teens and adults – use this link at the time of the event; no registration necessary.
We hope to see you there!

2023 Family Conference - Nashville
2023-07-13 - 2023-07-15 | Nashville Marriott at Vanderbilt University, 2555 West End Avenue, Nashville, TN, 37203, United States
The CRN Family Conference is back…and in-person for the summer of 2023. Join us July 13 – July 15 in Nashville, Tennessee. The event will take place at the Nashville Marriott at Vanderbilt University.
For agenda, travel scholarships and more details, click here.
We look forward to seeing you there!

Cystinosis Awareness Day
2023-05-07 | FL
On May 7, 2023 the cystinosis community will come together in honor of Cystinosis Awareness Day (CAD). Now in it’s sixth year, CAD is a global effort to raise funds and educate the general population about this disease. This year’s campaign will include testimonials from cystinosis warriors, caregivers/family members and international cystinosis organizations. In addition, we will feature physicians and rare partner organizations who’ve teamed up to amplify our message.
How will you spread the word? Here are some ideas to get you started:

“One Thing” Campaign. Share the one thing you wish everyone knew about cystinosis
Nominate yourself or a fellow cystinosis warrior for the Cystinosis Warrior Impact Program
Share your cystinosis odyssey or pass along information from our website
Volunteer for cystinosis research studies
Start a cystinosis fundraiser. Facebook and Instagram make this easy or contact Jonathan Dicks on how to host an event (jdicks@cystinosis.org)
Visit our general list on How to Help
To donate, click here

If you would like to volunteer to become and event ambassador, please email info@cystinosis.org.

Informational Q&A: Cystinosis QoL Study
2023-03-09 10:00 - 11:00 (America/New_York) | FL
We will host an informational session on the CRN funded study “Development of a patient-reported outcome to measure the health-related quality of life of children and adolescents with cystinosis: QUALIFY-US”
The research team will be available to explain the project and what participation would involve. Attendees will have the opportunity to ask questions.
March 9, 2023
10:00 – 11:00 am Eastern
Join the Zoom meeting using this link
In partnership with the Department of Medical Psychology at Germany’s University Medical Center in Hamburg-Eppendorf, Dr. Julia Quitmann and team are actively recruiting participants for online interviews. The study focuses on health-related quality of life (HrQoL) and aims to learn more about the challenges and management of the disease and the needs of patients living with cystinosis.
Both cystinosis patients and parents may be eligible. Additional information is available here or contact Isabell Suck or Stefanie Witt at quality-of-life@uke.de.

Rare Disease Day 2023
2023-02-28 | FL
February 28, 2023 is Rare Disease Day.
A movement created by Eurordis, Rare Disease Day unites an international community and promotes progress for all those affected. Rare Disease Day raises awareness for the 300 million people living with rare disease around the world and their families and carers; including our 2,000 cystinosis warriors.
Here are some resources and ways to participate in Rare Disease Day 2023:
Virtual Meetings. Join the discussion, “Intersections with Rare Diseases – A patient focused event” February 27, 9:00 am – 4:45 pm ET. Rare Disease Week on Capitol Hill activities through EveryLife Foundation. In the UK: Improving Care Coordination for Rare on March 2, 11:00 am – 13:00 pm GMT.
Share your rare. Take a selfie using Rare Disease International’s virtual photo booth, share your cystinosis story with us at info@cystinosis.org or visit rarediseaseday.org/share-your-story. Need inspiration? Read about Reza’s cystinosis story here.
Use your voice. Provide feedback to the NORD/Rare Disease Diversity Coalition (RDDC) survey to be heard, included, and counted. This national survey of underrepresented rare disease patients will help us better advocate for equal access to care for all people living with rare diseases.
Light Up for Rare by illuminating your home or a monument in your city.
Find an event in your area via the Rare Action Network.
Rare Disease Basics. Learn and share the basics of your rare disease with this intro to cystinosis video and our Cystinosis 101 page.
Rare Equity Guide; How can we achieve equity for people living with a rare disease? Tune in to the Understanding the Emotional Health of Rare Disease Patients session from Global Genes.
Research Participation. This cystinosis study can be completed from home. Have questions? Join this live Q&A event with researchers.
Guides for Rare Adults. Download the Rare Disease Employment Toolkit and Living rare: Family Planning Toolkit.
Rare Programming. Take advantage of the special programming offered by your patient advocacy organization.
Self care. It can be easy for rare patients and caregivers to over look their mental health. If you are in crisis, please reach out.
Make a donation. Donate time by volunteering with the CRN [info@cystinosis.org] or support our mission with a monetary contribution.

Cystinosis Sessions: July Video Call
2022-07-09 16:00 - 17:00 UTC | FL
Founding ALAB member, Brian Ensor shares his first-hand experiences with the AstraZeneca Vaccination Study. Join the Zoom call Saturday, July 9 at 4:00pm ET. Agenda items include the AZ study, open discussion and information on the ALAB’s call for new applicants.
Calls are held quarterly – we hope you are able to join us!
To join, click: https://zoom.us/j/2663523786
Meeting ID: 266 352 3786
New to Zoom? We recommend completing these steps prior to the call.

Secure access to a mobile device (PC, Apple, Android), desktop or laptop computer
Ensure reliable internet connection
Download Zoom Cloud Meetings here or through your device’s app store
Click on the link https://zoom.us/j/2663523786
Have the Meeting ID ready: 266 352 3786. If you use the link provided, the meeting ID is not needed.

Add the meeting to your calendar by clicking one of the buttons below.

CNE International Conference
2022-07-07 - 2022-07-10 | MTC1 Maria-Theresiacollege, Sint-Michielsstraat 6, 3000 Leuven, Belgium
This summer, Cystinosis Network Europe (CNE) will host an International Conference July 7-10 in Leuven, Belgium. The conference will be segmented into a scientific meeting on July 7 with the family conference running July 8-10.
Access details here including:

Conference website
Registration page
Hotel and lodging info
Session details click here
Questions? Email cystinose@ziggo.nl

Call for abstracts!

During the family conference, a poster session for young researchers will be held, which is intended to inform families and those living with cystinosis about their relevant research in the cystinosis field. Its primary aim is to fuel hope in people dealing with cystinosis by demonstrating the usefulness and impact of your research on patients’ everyday life, and drawing the perspectives for a better future. Learn more here.

CNE is an umbrella grouping of patient support, advocacy and research organizations in Europe and beyond.
Post-conference update
The organization of the 3rd CNE International Cystinosis Conference would like to offer all interested parties the opportunity to view the video recordings in 8 languages and watch the presentations.
You can find everything about the conference at https://cystinosis.eu.

2nd Annual SC Golf Fundraiser
2022-06-18 09:00 - 14:00 UTC | Wild Wing Avocet Golf Course, 1000 Wild Wing Boulevard, Conway, South Carolina, 29526
Gail Potts and her South Carolina team are back at it!
After a successful inaugural event last summer, Gail continues to honor her daughter Deanna’s legacy with a golf fundraiser to benefit the Cystinosis Research Network (CRN). Proceeds from the event will support research, family support and education for those impacted by cystinosis.
This year’s golf outing takes place on June 18 at Wild Wing Avocet Golf Course and includes a barbecue lunch. $260 per team or $65 per player with a 9am shotgun start. Get started by registering online today.
If you can’t make it to Myrtle Beach, there are additional ways to support Gail’s cause; you can sponsor a hole or contribute a raffle prize. She also has an Facebook fundraiser you can access here or donate on our web page.
Questions? Contact Elwin Miles at elwin.miles@gmail.com or 843-222-5974.
Check out this highlights reel from the 2021 golf outing on our YouTube channel.
Thank you for visiting!

5th Annual Cystinosis Awareness Day
2022-05-07 | FL
On May 7, 2022 we celebrate the 5th Annual Cystinosis Awareness Day.
This is an opportunity to educate the world about cystinosis, a rare disease that impacts 2,000 patients and their loved ones. Please join us in commemorating this event. Here are a few suggestions on how to participate:

Check out the Cystinosis Warrior Impact Program. A brand new initiative aimed at impacting each and every person living with cystinosis.
Awareness Day Giveaway. As a thank you for growing with the CRN, we are sending plantable awareness ribbons loaded with wildflower seeds. Request yours here.
Advocate. Share a snapshot or your perspective on living cystinosis with the people around you; in person or online with #cystinosisaware.
Research. Volunteer for research studies or make a donation.
For more information or additional ideas, email info@cystinosis.org.

We appreciate your support!

Cystaran Eye Drops Virtual Town Hall
2022-04-27 20:00 - 21:00 UTC | FL
On Wednesday April 27, Leadiant Biosciences and AllianceRx Walgreens Prime invite the cystinosis community to attend a virtual Town Hall. With Cystaran eye drops back in stock, the discussion agenda will cover recent approval and availability and an interactive Q&A session. Open to residents of the U.S.
Questions can be submitted in advance to cgreeley@cystinosis.org or live during the Zoom session. Use this link to tune in on April 27 at 8:00pm ET / 7:00pm CT / 6:00p MT / 5:00pm PT: https://us06web.zoom.us/j/83279423967 Passcode: [REDACTED]
