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…
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…
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…
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…
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…
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…
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…
We would once again like to thank Redcar and Cleveland’s Mayor Councillor Brenda Forster for choosing Cystinosis Foundation UK as one of her chosen charities, along with the Great North Air Ambulance Service (GNAAS). Mayor…
Iain McGilvray has raised over £17,000 for Cystinosis Foundation UK by completing a gruelling “Tough Mudder” event in June this year. He had to endure mud climbs, ice baths and even electric shocks! Iain decided…
28th February 2015 is the eighth international Rare Disease Day, which takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general…