Sometimes, the simplest words bring the most comfort. This #RareDiseaseDay Cheryl reminds us that checking in and showing up by asking, "How are you doing?" or saying, "I've got you," can make a difference. #cystinosis #CystinosisAware Rare Disease Day

"Cystinosis is challenging but very rewarding." Shout out to Kacy and all of the #RareDiseaseDay campaign contributors who are helping sharing their perspectives today and all year round! #cystinosis Rare Disease Day #CystinosisAware

Lá Fhéile Pádraig ☘️ Wishing the Irish cystinosis community, at home & abroad, a Happy St.Patrick's Day 🇮🇪 📢 Content created by Sinéad Maguire. Sinéad loves to travel and learn about new cultures, go shopping, go to musicals and concerts. Sinéad is also a cystinosis patient.

At Cystinosis Ireland, we talk about putting the FUN into fundraising ✨️ Mia's fundraiser was colourful, creative, and so kind 💛💙💗💜💚🩵 You're a superstar Mia and a wonderful brother to Hagan. Thank you so much to Mia, your family, friends and everyone who supported.

Cystinosis Ireland was created by parents, wanting to find a cure for cystinosis for their own children. The Mothers in our community have fought tirelessly to raise funds, support other families, & seek out research opportunities, all while taking care of their own children 💛

We are very proud to have Dr. Tracey McCauley representing us at the Rare Disease Research conference. #RareResearch25

What a weekend! The 11th Dublin Cystinosis Workshop and family event was a huge success. 90 researchers, clinicians, people with cystinosis and their families coming together to learn, share and have fun. This incredible bunch of people has the potential to change our world 💛

Tomorrow is the 8th annual Cystinosis Awareness Day! Chelsea is opening up for an #AskMeAnything session. Send in your ?s + look for videos from other #cystinosis community members as we spread awareness. For ways to get involved, visit tinyurl.com/2kspjhuh #cystinosisaware

On the 7th of May, we mark #CystinosisAwarenessDay with some of our wider, global cystinosis community 💛 How can you help? Share this post to help us raise awareness 📢 #CystinosisAware 🌏

Saoirse received a life-changing kidney transplant from a deceased donor, granting her a second chance at life to enjoy holidays, attend college, and live without the constant worry of dialysis 💜 Request your Organ Donor Card at ika.ie/donorcard/ #LeaveNoDoubt

Happy Father's Day 💙 To the Dads in our community. Those who founded Cystinsosis Ireland & other cystinosis organisations. Those who fundraise. Those who research. Those who volunteer. Those who show up, those who participate, those who never give up. We appreciate you.

Human Tissue Bill - organ donation Today, 17 June 2025, the Human Tissue Act 2024 was enacted. More information is available about what the changes to the law means on the HSE website - hse.ie/organdonation, and on YouTube youtube.com/watch?v=lBLp6Q…

Dr. Jennifer Hollywood and Dr. Alan Davidson of the University of Auckland have been conducting research funded by Cystinosis Ireland through our Seedcorn funding scheme. More info on all research ➡️ cystinosis.ie/research/resea…

Cystinosis Ireland is hosting the CNE International Conference in 2026. More information to follow. Please support us at cystinosis.ie.

THIS IS YOUR 1 YEAR COUNTDOWN CALL! Cystinosis Ireland is hosting the CNE International Conference in July 2026! For more information: cystinosis-europe.eu/our-conference

His project was selected as it demonstrates “significant potential to address unmet needs within these rare communities”. For more information on Francesco’s work please visit our Research page on cystinosis.ie/research