Jonathan Terry Awarded MBE
We are incredibly pleased to report that our founder, Jonathan Terry, has been awarded an MBE in the Queen’s 2019 New Year’s Honours List. The honour is given to people who have made an outstanding…
National Cystinosis Study Day at The Priory Rooms, Birmingham
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…
Sponsored Walk for Ava
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…
Mark’s Three Peak Challenge for CFUK
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…
European Cystinosis Conference Berlin, 13th-15th July 2018
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…
Orphan Europe Cystinosis Patients/Experts Half-Day Meeting – 14th June 2018
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…
We’re Looking for New Trustees – Can You Help?
Cystinosis Foundation UK is a charity that helps and supports people living with the rare orphan condition cystinosis. We are looking for new trustees to bring their professional skills and expertise to the organisation so…
Penkridge Runners Raise Over £700
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.
Distal Myopathy Study – Participants Needed
Dr. Florian Eichler, Associate Professor of Neurology at the Massachusetts General Hospital in Boston, US is conducting a multi-part research study, looking at distal myopathy (muscle wastage in the hands, arms, feet and legs) in nephropathic…