SUPPORTING INDIVIDUALS, FAMILIES AND RESEARCHERS
IN THE CYSTINOSIS COMMUNITY

Newsletters

The Cystinosis Foundation USA has released their most recent newsletter detailing their progress in funding research, support for organisations around the world and other activities. Read The Newsletter.

Issue 19 (November 2010) of our newsletter has recently been published and if you are a member of the Foundation you should receive your copy soon, or you can download it directly from the website (see below). This release is a bumper issue, including a report on the September International Conference in Italy, which we […]

The August Newsletter Is Now Available The latest CLIMB newsletter has been released: Read the August Newsletter. Who are CLIMB? CLIMB (Children Living with Inherited Metabolic Disorders) are a national organisation working on behalf of children, young people and families affected by metabolic disease and with whom the Cystinosis Foundation has a close relationship. For […]

Issue 18 (April 2010) of our newsletter has recently been published and if you are a member of the Foundation you should receive your copy soon, or you can download direct from the site (requires Adobe Acrobat Reader). Thank you to everyone who has contributed to its content, with special thanks to our new production […]

Issue 17 (September 2009) of our newsletter has recently been released and includes stories covering fund raising, research, experiences of dealing with Cystinosis and a retrospective of the first 10 years of the Foundation. Thank you to everyone who has contributed to its content! If you have not received your newsletter, or would like to […]

Issue 16 (January 2009) of our newsletter has recently been released and all members should now have their copy. And a bumper edition it is too, with stories on research, medical notes and experiences of dealing with Cystinosis. Thank you to everyone who has contributed to its content! If you have not received your newsletter, […]

Issue 15 (September 2008) of our newsletter has recently been released and all members should now have their copy. Thank you to everyone who has contributed to its content! If you have not received your newsletter, or would like to become a member and receive one, please contact us or you can choose to download […]

Issue 14 (April 2008) of our newsletter has recently been released and all members should now have their copy. The newsletter includes information about the international conference in Dublin during June of this year. To download a copy please click here.

We are pleased to announce that our latest newsletter has just been released and can be downloaded here. The newsletter is free to our members and details recent activities regarding the Cystinosis Foundation UK, Cystinosis and related news. If you have any queries regarding the newsletter, or the Foundation in general, please contact us.

The latest newsletter was recently sent out to the Foundation’s members but can also be downloaded here.

Student Voice Prize 2024 Our chair, Will Newman, once again had the opportunity to get involved with the annual Student [...] Read more...
Watch back elements of our CNE International Conference 2024 – Better Together. Our joint International Conference with CNE, held in Manchester in July 2024, was packed full [...] Read more...
Cystinosis Comic Book Series by Artist Kevin McCalla The Cystinosis Research Network in the US has teamed up with Kevin McCalla, a young artist who [...] Read more...
Spring 2025 Newsletter The Spring 2025 edition of our email newsletter is available to view at the link below. CFUK [...] Read more...
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