Cystinosis Ireland was founded in 2003 by those living with Cystinosis and their families. The organisation continues to be led by people with personal experience of living with Cystinosis both here in Ireland and abroad.

Research, Awareness, Support

Our goals remain the same since our foundation – to invest in research, raise awareness and provide support. We are based in Dublin but provide support online and in person throughout Ireland and Northern Ireland. We invest in research internationally to ensure the best minds are doing the best work.

Cystinosis Ireland works to achieve the highest standards in all the work we do.  In 2020/21 we undertook a significant strategic and governance review to see where our organisation was working well and where we had gaps to fill.  As a result of this, and in consultation with our families, supporters, peer organisations and others, we developed a strategic plan and set up dedicated sub committees to achieve our aims.  You can see an outline of the way the organisation works on this graph. We are working towards full compliance with Code by the end of 2024.

We are a registered charity under the Charities Act 2015. Charities Regulatory Authority Number: 20053796; CHY Company Number: 371955; CHY15517