In March 2006, at 21 months old, Jenna and Patrick Partington were diagnosed with Cystinosis. Their doctors had initially never heard of Cystinosis and believed that it was only a text book disease. Jenna and… 

Sara Laing, from Moorside, Sunderland, is 15 years old and was diagnosed with Cystinosis at 18 months. The Cystinosis damaged her kidneys leading to their failure 7 and a half years ago, and since then… 

Linked are two articles from American newspapers that highlight the story of families who have recently had children diagnosed with Cystinosis. The first linked article covers the story of six-year-old Victor Gardner and includes a… 

Linked are two articles from American newspapers that highlight the story of families who have recently had children diagnosed with Cystinosis. The first linked article covers the story of six-year-old Victor Gardner and includes a… 

Juliet Scully and her father, Bob Bailey, celebrated their 60th and 85th birthdays on Saturday 22nd July. Juliet knows the grandparents of Cystinosis sufferer, Lena Forsyth, and having 5 healthy grandchildren of her own, wanted… 

Great news! We have now broken through the £80,000 mark in our attempt to raise £100,000 to fund Cystinosis research projects! Numerous fundraising events have taken place helping us to this total and we are… 

On July 29th over 25 walkers took part in an organised sponsored walk around Aden Country Park, near Mintlaw in the North East of Scotland, to raise funds for the Cystinosis Foundation UK. The 3.5… 

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…