Cystinosis is an extremely rare and incurable disease which has some devastating effects on those born with it. As it 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.
Since our foundation in 2003, we have invested almost €1.9m 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.
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 very generous donor. This ensures that all funds raised go into research around Cystinosis. A detailed listing of all funds raised and used is presented in our Audited Financial Statements, available in the “Who are we” section of our website.
Charities Regulatory Authority Number: 20053796 Company Number: 371955
Current Fundraising Events
Previous Fundraising Events
Ways to Fundraise
Before you get to the 19th hole, you can donate to one of our golf classics here.
If you know can tell your Homers apart, and want to show off that brain of yours, get in touch about organising a table quiz.
Eat and Greet
If you can rival Mary Berry with a mixer, or make coffee like George Clooney, get in touch about hosting a coffee morning, bake sale or other foodie fun.
Is your fitbit encouraging you to get out and about more? How about using it as an excuse to clock up some miles – and some Euros – with a physical challenge for Cystinosis Ireland. From road races to skipping challenges, we can help with your event.
If you’re an adrenaline junkie and want to prove it, let us know if you plan to jump out of a plane or scale tall buildings. We’d love to see the pictures!
On one of the most special days of your life, Cystinosis Ireland is honoured to be a small part of things. Get in touch about wedding favours we can provide for your guests.
If you would like to make a regular donation to Cystinosis Ireland, you can find standing order details here. If you already give monthly, please check out the tax back options to maximise your generous gift.
If you are planning for the future, Cystinosis Ireland would be honoured to be part of your legacy. Get in touch to find out more.
Your Own Ideas
What have we not thought of that you have? We are always amazed by our inventive and committed supporters. Let us know what you would like to do to support research into cystinosis!