The Trustees are delighted to welcome you to our new website. We hope you like the new design, which is meant to make it easier for you to find what you need. Massive thanks to… 

The Foundation has been made aware that some families have recently been having difficulty receiving cysteamine eye drops at the correct dose of 0.55%. We have made enquiries to various different organisations into this and… 

A big thank you to Scott Hutchison of the band Frightened Rabbit for raising nearly £800 for CFUK over Christmas. Scott, uncle to 2 year-old Morven Hutchison, who has cystinosis, wrote, recorded and published this… 

Thanks to the staff at Glasgow Airport, who treated 11-year-old Zac Borland to what sounds like a dream come true for any boy. As reported in the Daily Record at the link below, Zac, who… 

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…