Since Cystinosis is so rare large pharmaceutical companies are reluctant to invest in research, therefore, much of the research into Cystinosis is funded by patient support groups like ours. All donations we receive go directly to fund research into finding treatments and ultimately a cure for Cystinosis.

3 Million Euro Raised

Since our foundation in 2003, we have invested in excess of €3m in research, including some ground-breaking work with institutions including University College Cork, University College Dublin, the University of Leuven, University of Florida, the University of Auckland and the California Pacific Medical Centre in San Francisco. You can see details of the research we are currently funding in our Research section of the website.

Where do the Funds GO?

We always like to remind our wonderfully generous donors and supporters that Cystinosis Ireland effectively has no overheads as all expenses are all sponsored by a philanthropic donor. This ensures that all funds are invested in research around Cystinosis and supporting people with cystinosis and their families in Ireland. A detailed listing of all funds raised and used is presented in our Who We Are page, which you can also access on the link below.

Fundraising News

News, Fundraising 25/06/2024

Tracey's challenges for cystinosis!

Support Tracey in taking on six for six in 2024!

Fundraising 27/02/2023

Bill’s Marathon Challenge!

Hello all, my name is Bill Leacy, and I will run in the Los Angeles Marathon on 19 March in honour of my friend, Darren Barnes.

Fundraising 15/12/2021

Cathal’s Omagh Half Marathon!

Cathal Judge is taking on the challenge of the Omagh half marathon in April 2022. 

Ways to Fundraise

Fundraising can be as simple and fun as you want! Our incredibly inventive supporters have come up with all sorts of wonderful fundraisers over the years. If you are looking for some ideas, you can think about

  • Golf or sports classics

  • Table quizes

  • Eat and greet - coffee mornings or bake sales

  • Adrenaline challenges - from sky dives to marathons

  • Wedding favours

  • Legacy giving

  • Monthly donations

Please do get in touch to let us know if you have any ideas or would like any support in putting a fundraiser together. We can create a specific fundraising page for you to help you get the word out!