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.
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.