We are pleased to announce that Jonathan Terry, founder of Cystinosis Foundation UK, has been invited to speak at Orphan Europe’s International Meeting in October. Jonathan will be speaking for all generations with Cystinosis about…
The 4th International Cystinosis Conference was held at Noodwijkerhout in the Netherlands between June 30 – July 2 The conference brought together families living with Cystinosis and the best international experts. Over the 2 days,…
For the last five years, June Terry, the mother of Jonathan the founder of the Foundation, has held a Bridge Day. With the promise of coffee, lunch and tea as well as competitive bridge, she…
As part of activities to mark Cystinosis Day, Philippa Blackham, who lives in Edinburgh, baked various cakes and biscuits, which were sold at a cake sale at W Greens, Legal Publishers, her place of work.…
The grandparents of 5-year-old Cystinosis sufferer, Lena Forsyth, raised £700 for the Cystinosis Foundation UK at a dance night in Mintlaw, Aberdeenshire. The dance was held on Saturday, 20th May at the Mintlaw Public Hall…
The Cystinosis Foundation in the USA has for the last few years run a support forum for those connected and affected by Cystinosis. The forum is free to participate in and only requires that you…
It is well known that Cystinosis is a rare condition, and with only 30 diagnosed individuals across the whole of Australia and New Zealand, it can be even harder to cope with in these vast…
On May 28th Max Kendell (13 years old) and his friend George Crossley (14 years old) raised nearly £200 for the Cystinosis Foundation by cycling 37.25 miles from Tutbury to Derby and back again! Their…
A further update to our research campaign – as of May 2006, we have now raised £78,522 towards our £100,000 appeal target! Yet again we thank all of those involved in raising funds – from…
In September this year, Paul Clifford is hoping to cycle around 778km through Spain and France in order to raise money for the Cystinosis Foundation UK. This money will be used to fund the Foundation’s…