Donate 5th Annual Dublin Cystinosis Workshop 2019 - 26 & 27 April 2019

Who we are

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. Our goals remain the same since our foundation - to fund research, raise awareness and provide support. We are a registered charity under the Charities Act 2015.


Our research strategy is aimed at improving the lives of those living with cystinosis, finding improved therapies and one day, finding the cure. Contact us to find out more or if you're a researcher and are interested in working with us.


Our priority is ensuring that families know they are not alone. We offer support on an individual basis to newly diagnosed patients and their families, existing members of the community, and adults with cystinosis.


Like many rare diseases, very little is known about cystinosis. We work to inform medical practitioners, researchers, and the general public about this orphan disease. Raising awareness of cystinosis through education is an important aspect of our work.


We provide information and updates about the disease through our various social media platforms - keeping patients, family members, researchers and international cystinosis groups up to date on our research projects and fundraising events.


A detailed listing of our accounts is presented in our Audited Financial Statements, available here under the Financials section of our website.

Learn more

Our people

Our Executive Committee is comprised of 10 members: one person living with cystinosis, three family members of people with cystinosis and six non-related, industry professionals. The committee sets the work programme and agenda for the organisation. The day to day management of activities is undertaken by our Research Officer and Operations Manager. Within this committee, sub committees manage various working groups including Education and Support, Media and Publicity, Fundraising, and Research.

Industry professional and long time supporter of the charity, offering his knowledge and expertise to the executive committee

Mick Swift


Mother to two adults with cystinosis and part founder of the charity

Sue Maguire

Assistant Secretary, Head of Patient Support

Industry professional offering his expertise to the executive committee

Liam McFadden


Father to two adults with cystinosis and part founder of the charity

Andy Maguire

Head of Fundraising

Industry professional offering her expertise to the executive committee

Rachael Reilly

Head of Media

Mother to a child with cystinosis and part founder of the charity

Anne-Marie O’Dowd

Head of Research

We are members of

Our patron

Our Patron is the oscar nominated actor Stephen Rea.