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… Distal Myopathy Study – Participants Needed
Orphan Europe’s Cystadrops® are now available on prescription in the UK. They are described as ‘a unique viscous eye drops solution, indicated for the treatment of corneal cystine crystal deposits in adults & children from… Cystadrops® Now Available on Prescription
The McGill University Children’s Hospital in Montreal, Canada is still looking for participants who have cystinosis, to take part in a study they are undertaking to “better understand a special type of mutation (called a… McGill University Nonsense Mutation Study
The Cystinosis Research Network in the US has teamed up with Kevin McCalla, a young artist who has cystinosis, to create a new comic book series that aims to “create a simple explanation for treating… Cystinosis Comic Book Series by Artist Kevin McCalla
Last year Wendy Exelby, whose son Adam has cystinosis, raised £400 for us by doing a sponsored walk. This year Wendy is once again doing a sponsored walk. It will be a 10 mile walk… Wendy Walks Again for Cystinosis
Back in April, Paul Stone ran the London Marathon, raising £1,258 for us. Paul chose to fundraise for us because his cousin’s son, Elliot, has cystinosis. We don’t officially get given any charity places for… Marathon Runner Paul Raises Over £1,200!
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… POSTPONED: National Cystinosis Study Day at QE Hospital, Birmingham
Sadly on Friday 3rd March Steve Watts passed away after battling cancer for a long time. He was very close to his 9 year old nephew Harry Beardsell who was diagnosed with cystinosis at the… £1,550 Donated in Memory of Steve Watts
On 4th March 2017, 260 guests enjoyed a fabulous evening of entertainment at this year’s ‘Great Big Glitter Ball’. The event was held at Prestonfield House Hotel in Edinburgh, in aid of Cystinosis Foundation UK.… ‘Great Big Glitter Ball’ – A Great Big Success!
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… Cystinosis Education Day, 19th September 2017