Our Governance

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.

Cystinosis Ireland is registered with the Charities Regulatory  Authority (number 20053796) and Revenue Commissioners (CHY15517) for charitable purposes and with the Companies Office (number 371955).   The Charities Governance Code applies six principles of governance and we are working towards full compliance with Code by the end of 2022.