Who Are Orphan Europe
Orphan Europe were one of our sponsors at the Cystinosis UK conference held in Manchester in September this year for whom we were very grateful . This article explains who they are and what their… Who Are Orphan Europe
Woman With Cystinosis Gives Birth
28-year-old Alison Kirk, from Wallasey, Wirral, has cystinosis and has been on kidney dialysis since she was 11. However, despite the odds, Alison gave birth to Gracie Mae on 21st November 2011, becoming one of… Woman With Cystinosis Gives Birth
Newsletter – November 2011
Issue 20 (November 2011) of our newsletter has recently been published and if you are a member of the Foundation you should receive your copy soon, or you can download it directly from the website… Newsletter – November 2011
Wrist Bands
We have a new stock of wristbands for sale. Please contact us if you wish to purchase any. They cost £2 each plus postage and packing. All monies raised go directly to the Foundation to… Wrist Bands
Another Amazing USA Fundraiser
Congratulations to the Cystinosis Research Foundation on yet another successful golf day fundraiser. The Cystinosis Research Foundation raised over $215,000 on the 14th November during its Fore A Cure, Natalie’s Wish Golf Tournament at the… Another Amazing USA Fundraiser
Cycle In Memory Of Acacia
Acacia Dawn Robinson was only 4 months old when, tragically, severe heart complications ended her life prematurely. As a mark of gratitude for the support the family received, Acacia’s grandparents, Michael and Julia Robinson, decided… Cycle In Memory Of Acacia
Sock Site Exciting Success
Congratulations and a big thank you to the Yates family for all their work in creating TheSockDrawer auction website, raising money for the Cystinosis Foundation UK! Patrick Yates, website creator, picks up the story: "The… Sock Site Exciting Success
A Wish Come True For Thomas
Nine-year-old Thomas Goulsbra has Cystinosis. Recently he also had the added complication of going through a lumbar puncture to relieve fluid on his brain. This has been a trying time for the family, but a… A Wish Come True For Thomas
Sarah Laing on ITV television
Twenty year-old Sarah Laing has Cystinosis. Her story and the research being undertaken at Sunderland University, not far from where Sarah lives, are told on a short ITV television broadcast. To see the full video,… Sarah Laing on ITV television
UK Cystinosis Conference 2011
On 24th September 2011, over 100 people attended the UK Cystinosis conference at the Manchester Conference Centre– the first UK conference for several years and certainly the largest. Attendees included individuals from the Foundation itself,… UK Cystinosis Conference 2011