SUPPORTING INDIVIDUALS, FAMILIES AND RESEARCHERS
IN THE CYSTINOSIS COMMUNITY

Adults Needed to Participate in Research Study

The Cystinosis in Emerging Adulthood study in coming to the UK! In June Maya Doyle, a social worker from the USA, will be in the UK conducting interviews for the ‘Cystinosis in Emerging Adulthood’ Study, on behalf of the Cystinosis Research Network. Young adults, aged 18 and over with cystinosis, and their parents, are encouraged to participate. The purpose of this research is to understand the experience of growing up with and living with cystinosis as a young adult. Interviews will last 60-90 minutes, and individual interviews conducted by the researcher will take place in the participant’s home or a location convenient to them. You may contact the researcher by email to ask questions about this study, who will contact you by email or phone to discuss your eligibility for the study and answer any questions. Get more information about the study and register here: https://www.surveymonkey.com/s/yacys-UK

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