The US-based Cystinosis Research Network have just released their Cystinosis Parent Handbook. The handbook, available online at the link below, is a very comprehensive resource for parents of children with cystinosis as well as older… 

As part of their “Strategy for Rare Kidney Diseases”, the Renal Association are in the process of developing the rarerenal.org website. The website, which covers a number of rare kidney conditions including cystinosis, aims to… 

A summary of the 7th International Cystinosis Conference, held in France earlier this year, is available on the following link: http://www.cystinosisfoundation.org/Paris2012/Summary/ Two of our trustees, Roy and Ami, attended the conference. Please get in touch… 

Prescriptions are now free to all in Northern Ireland, Scotland and Wales. Patients in England with cystinosis may find that they are asked to pay for prescriptions once they reach adulthood, so it is worthwhile… 

Nikki Wood is selling a range of handmade greetings cards through eBay, with proceeds going towards the charity. Click on the following link to view those available. These cards are superb value at 99p each.… 

Despite the weather being more suited to sponsored snooker and darts, so many of you have donned the waterproofs and tackled amazing physical challenges to raise money for Cystinosis Foundation UK. Here are some of… 

We’d like to wish Tom Barlow and his compatriate Stuart all the best in their attempt at L’Étape du Tour. Having won two places to take part in L’Étape du Tour, where amateur cyclists race… 

The Cystinosis in Emerging Adulthood study in coming to the UK! In June Maya Doyle, a social worker from the USA, will be in the UK conducting interviews for the ‘Cystinosis in Emerging Adulthood’ Study,…