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Dublin Cystinosis Workshop
Cystinosis Ireland was created and is managed entirely by family members and family friends of those living with cystinosis. Its purpose is dedicated to raising money to fund research into cystinosis in Ireland and all over the world. We aim to reach out to families of newly diagnosed children to offer ongoing support and assistance.
Research funded focuses on understanding the causes and progression of the disease, identifying possible new therapies, and the enhancing of quality of life for people diagnosed with Cystinosis. Our ultimate aim is to one day find a cure.
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.
Cystinosis Ireland exists solely to support people with the condition and their families. All overhead costs for Cystinosis Ireland are remunerated by a private benefactor, ensuring that all funds raised go into clinical research of cystinosis. A detailed listing of our accounts is presented in our Audited Financial Statements, available under the Financials section of our website.
Our committee is comprised of 10 board members: 3 family members of patients with cystinosis and 7 non-related, industry professionals. The executive committee manage the day to day activities of the charity. 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
Industry professional and long time supporter of the charity, offering his knowledge and expertise to the executive committee
Mother to two adults with cystinosis and part founder of the charity
Industry professional offering his expertise to the executive committee
Industry professional offering expertise to the charity, as well as a sibling to a child with cystinosis
Father to two adults with cystinosis and part founder of the charity
Industry professional offering her expertise to the executive committee
Mother to a child with cystinosis and part founder of the charity
Our Patron is the oscar nominated actor Stephen Rea.
