Cystinosis – UK Kidney Association

To improve the care for all patients with cystinosis in the UK
To collaborate with the National Designation Centres for Cystinosis
To work together with Cystinosis Foundation UK and other patient groups
To register every willing patient with cystinosis onto RaDaR
To promote research for the benefit of patients with cystinosis, and their families
To promote educational resources for patients with cystinosis, and their families

Working with the evolving national designation centres and other specialist units to promote equity of access to high-quality clinical care
Working with RaDaR to ensure high-quality data capture to enable quality assurance and future research projects in cystinosis
Recruitment of patients to the NIHR National Bioresource for Cystinosis
Contributing to research in new preparations to treat cystinosis

We work in collaboration with various cystinosis groups around the world, including:

The Cystinosis Foundation UK supports individuals, families and researchers in the Cystinosis community.

RDG Lead(s)	David Game, Adult Nephrologist, Guy’s & St Thomas’ Hospital, London RDG Lead
Patient representative(s)	Thomas Kenning, Secretary and Trustee, Cystinosis Foundation UK Will Newman, Chairperson and Trustee, Cystinosis Foundation UK
Other members	Sally-Anne Hulton, Paediatric Nephrologist at Great Ormond Street Hospital, London Graham Lipkin, Adult Nephrologist, University Hospital Birmingham Lavanya Kamesh, Adult Nephrologist, University Hospital Birmingham Amrit Kaur, Paediatric Nephrologist, Manchester Children’s Hospital Susmito Biswas, Ophthalmologist, Manchester Royal Eye Hospital Muir Morton, Adult Nephrologist, Manchester Royal Infirmary Kate Hillman, Adult Nephrologist, Manchester Royal Infirmary Nabil Melham, Paediatric Nephrologist, Evelina Children’s Hospital London Caroline Booth, Paediatric Nephrologist, Evelina Children’s Hospital London John Sayer, Adult Nephrologist, Royal Victoria Infirmary Newcastle Vicky Moxham, Adult Nephrologist, Guy’s Hospital London Alex Lalayiannis, Paediatric Nephrologist, Birmingham Children’s Hospital Catriona Ryan, Paediatric Nephrologist, Birmingham Children’s Hospital

Some members of the RDG have received honoraria for speaking and/or research grants from Chiesi and/or Recordati Rare Diseases