The 2018 European Cystinosis Conference is taking place in Berlin, Germany from July 13th to 15th. The main theme of the conference is “Growing Up with Cystinosis – The Opportunities and The Challenges”. At the conference, doctors and researchers will present their latest findings. Patients and families meet, exchange, learn as well as educate. The […]

On 14th-15th June 2018, Orphan Europe will be hosting the 3rd Ophthalmology Cystinosis Forum. This event will take place at the Radisson Blu Edwardian Kenilworth Hotel, 97 Great Russell St, Fitzrovia, London WC1B 3LB. The full OCF day on Friday 15th June will gather approx. 50 key experts from several countries, committed to the management […]

We’d like to say a big thanks to Michelle Hull, Tashaa Preece, Paula Kimberley and all the ‘Penkridge Runners’ who completed the 2018 Stafford Half Marathon. They raised over £700 for us on their JustGiving page.

UPDATE: Unfortunately this event has been postponed until Spring 2018. When a new date is decided we will publish a new post with full details.   The QE Hospital in Birmingham are hosting a ‘National Cystinosis Study Day’ on Tuesday, 19th September 2017, from 9:30am to 4:30pm. The day will include talks from various health […]

A ‘Cystinosis Patient and Clinician Education Day’ is being held on Tuesday 19th September from 9.30 – 16.30 at the Postgraduate Centre, Queen Elizabeth Hospital, Birmingham. If you are interested in attending, or would like more information, please email

An online silent auction is being organised in honour of 18 month old Ellie Pond, who has cystinosis. Since Ellie’s diagnosis last year her family and friends have been keen to fundraise and raise awareness of the condition. Ellie’s Grandad, Will recently raised over £3,000 by having her name shaved into his head. ‘Ellie’s Auction’ […]

When Will Newman’s granddaughter, Ellie, was diagnosed with cystinosis 5 months ago he wanted to help raise awareness of the condition. On 9th December he had ‘Ellie’ shaved into his head, a fantastic, albeit unusual idea for a fundraising campaign! Sometimes it’s the most unusual ideas that attract the most attention – Will’s campaign has […]

Cystinosis Foundation UK supporter, Wendy Exelby, who has a son with cystinosis, will be doing a 16.6. mile sponsored walk from her home in Old Goole through to Adlingfleet where she grew up. The walk will take place on 15th October and will be made challenging by the fact that she suffers from arthritis and […]

Back in June this year a group of energetic fundraisers took part in the Gung-Ho! Seriously Fun 5K Inflatable Obstacle Course in Edinburgh. David Kells, Adam Neilson, Steve Gault & Rebecca Gault all took part in the event, raising £495 for Cystinosis Foundation UK. They chose to raise money for us because David’s son Riley […]

Cystinosis Foundation UK supporter Amy Mace recently organised an ambitious charity quiz night. In addition to a quiz the event also included a raffle with generous prizes donated by local businesses. It took place on 21st May 2016 and was a huge success, 130 people took part, raising a fantastic total of £2046. Amy’s son, […]

We’re Looking for New Trustees – Can You Help? Cystinosis Foundation UK is a charity that helps and supports people living with the rare [...] Read more...
European Cystinosis Conference Berlin, 13th-15th July 2018 The 2018 European Cystinosis Conference is taking place in Berlin, Germany from July 13th to [...] Read more...
Cystinosis Comic Book Series by Artist Kevin McCalla The Cystinosis Research Network in the US has teamed up with Kevin McCalla, a young artist who [...] Read more...
Newsletter – November 2012 Issue 21 of the Foundation newsletter has recently been finalised and is available to download [...] Read more...
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