Issue 21 of the Foundation newsletter has recently been finalised and is available to download at the link below. Thank you to everyone who has contributed to the content. Newsletter November 2012 The paper version… Newsletter – November 2012
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… Cystinosis Research Network – a guide for parents
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… New online resource for rare kidney conditions in the UK
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… Link to 2012 International Cystinosis Conference Summary
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… Are You Entitled To Free Prescriptions?
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.… Greetings Cards for sale for Cystinosis Foundation UK
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… Braving the rain for cystinosis!
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… Allez les Cyclistes
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,… Adults Needed to Participate in Research Study
In March, we told you about the Cardgains Charity Challenge, which this year is a 30km walk through London in aid of Cystinosis Foundation UK. We just wanted to remind everyone who will be anywhere… Cardgains Olympic Challenge – less than 3 weeks to go!