Events

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 Michelle.Lowe@uhb.nhs.uk.

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 […]

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 will take place on 15th October and will be made challenging by the fact that she suffers from arthritis and […]

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 in the event, raising £495 for Cystinosis Foundation UK. They chose to raise money for us because David’s son Riley […]

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 21st May 2016 and was a huge success, 130 people took part, raising a fantastic total of £2046. Amy’s son, […]

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 Forster recently hosted a charity ball, this consisted of a great night of entertainment plus a three course meal. There […]

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 to do the event after his cousin, Joel was recently diagnosed with cystinosis. He set a target of £5,000 but […]

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 public and decision-makers about rare diseases and their impact on patients’ lives. You can help raise awareness of cystinosis and […]

Cystadrops® Now Available on Prescription Orphan Europe’s Cystadrops® are now available on prescription in the UK. They are [...] Read more...
POSTPONED: National Cystinosis Study Day at QE Hospital, Birmingham UPDATE: Unfortunately this event has been postponed until Spring 2018. When a new date is [...] Read more...
Cystinosis Comic Book Series by Artist Kevin McCalla The Cystinosis Research Network in the US has teamed up with Kevin McCalla, a young artist who [...] Read more...
Newsletter – November 2012 Issue 21 of the Foundation newsletter has recently been finalised and is available to download [...] Read more...
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