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…
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…
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…
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…
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…
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…
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…
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…
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.…
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…