SUPPORTING INDIVIDUALS, FAMILIES AND RESEARCHERS
IN THE CYSTINOSIS COMMUNITY

Chairperson – Will Newman

Joined: February 2020

My granddaughter, Ellie, was diagnosed with nephropathic cystinosis in 2016, just after her 1st birthday. Her twin sister, Molly does not have the condition. I’m a retired librarian and am keen to help the charity in any way I can. I’m currently the link person with Cystinosis Network Europe and the worldwide Community Advisory Board.

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