Resources for clinicians and researchers
Many of the member organisations of CNE support research either through direct funding or via patient expert engagement processes.
The Community Advisory Board (CAB) of CNE is an expert group of patient advocates who live with cystinosis. The members of the CAB are trained in medical research principles and methods. They also have experience of regulatory and reimbursement processes. The CAB is happy to discuss research at all stages of development to ensure the most effective outcomes for your work and our community. Find out more about the CAB here.
Finally, the biannual International Cystinosis Conference is a key place to learn more about the condition, the research going on internationally, and most importantly, meet the people most affected by your work.
Resources for adult patients and families
Our international colleagues have developed some very useful guides for family use, both on diagnosis and as your child grows. Some of this information may also be useful for professionals interacting with your family - educators, family healthcare professionals and allied health professionals.
Video explaining cystinosis (Osmosis.org)
Information for General Practitioners about cystinosis
Information about cystinosis from CRN (US)
Expert guidance on the multidisciplinary managment of cystinosis in adolescent and adult patients
Transition of young adult kidney transplant recipients
A special edition of the journal Cells, which was part funded by CNE: Cells editorial: A Personal History of Cystinosis by Dr. Jerry Schneider.
Plain English Guide to Research Terms, published by Health Research Charities Ireland
A toolkit for research charities to begin Public Patient Involvement, published by Health Research Charities Ireland and Trinity College Dublin.