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For a Brighter Future



Cystinosis Foundation UK aims to:

Improve

We act on behalf of the whole cystinosis community to fundraise and advocate for improved patient outcomes, better treatments and further research. Together, we can have a brighter future.

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Inform

We have been supporting patients, families, caregivers, clinicians and researchers in the cystinosis community since 1998, and we’ve raised over £3,000,000.

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Share

We support our community through sharing your stories, your experiences and your answers. Read some of those stories here. Together, we are stronger every day.

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Our Projects

Cystinosis Foundation UK has low overheads and is staffed entirely by volunteers who work around full time jobs, families and other commitments. As such we channel as much of our funds as possible towards research and supporting those with cystinosis. Click on the links below for some key initiatives we have been working on.

Quality of Life Survey
Research Collaboration
Patient Advocacy
International Conference

Our Trustees


Cystinosis Foundation UK has a board of trustees who set the strategic direction, make key decisions, and oversee the charity’s financial health and legal compliance.

The board all have different backgrounds, experiences and skills that help them to steer the charity as a collective in order to fulfill our aims. All have different connections with cystinosis. And all give their time freely.
MEET OUR TRUSTEES

Contact us

Cystinosis Foundation UK can be contacted in the following ways:
advice@cystinosis.org.uk
Cystinosis Foundation UK, Unit 81304, PO Box 15113, Birmingham, B2 2NJ

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