NEW VENUE: The event will now be held at The Priory Rooms in Birmingham City Centre. The QE Hospital in Birmingham are hosting a ‘National Cystinosis Study Day’ on Saturday, 26th January 2019, from 9:30am to 4:30pm. The day will include talks from various health professionals, plus the chance to meet other people who have cystinosis. […]

The family of Ava, who was diagnosed with cystinosis last December, have organised a sponsored walk to raise money for Cystinosis Foundation UK. The walk takes place on Sunday, 26th August 2018. At the time of writing (23rd August) they have raised an incredible £4,440. For more information, or to make a donation, please visit […]

CFUK supporter Mark Hewitt got in touch with us recently, to let us know about his latest fundraiser: “I am raising funds for the Cystinosis Foundation UK, by walking the Yorkshire 3 Peaks Challenge on September 1st 2018. This will be the third fundraising event that I have arranged, following on from the successful Sheffield […]

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 […]

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