SUPPORTING INDIVIDUALS, FAMILIES AND RESEARCHERS
IN THE CYSTINOSIS COMMUNITY

Newsletters

The Summer 2024 edition of our email newsletter is available to view at the link below. CFUK Newsletter – Summer 2024 This includes: – Understanding the Lived Experience of Cystinosis in the UK – Will’s Visit to Sunderland University – Millions Mark Rare Disease Day – Margaret’s Women’s Institute Talk – Nursery Fun Run – […]

The Summer 2023 edition of our email newsletter is available to view at the link below. CFUK Newsletter – Summer 2023 This includes: – NHS England Awards Funding for New Cystinosis Service – Student Voice Prize 2022 – Fun Quiz Raises Awareness and Funds – GP Surgery Raises Awareness – 2024 CNE Conference – Real […]

The Winter 2022 edition of our email newsletter is available to view at the link below. CFUK Newsletter – Winter 2022 This includes: – Opportunity for UK Cystinosis Families to Become Involved in a New Research Project – Gene Therapy News – History of Cystinosis – Contact: For Families With Disabled Children – Joint-funded Research […]

The Summer 2022 edition of our email newsletter is available to view at the link below. CFUK Newsletter – Summer 2022 This includes: – Procysbi Available in Wales – Fundraising by Nicole Lawson – 3rd CNE International Cystinosis Conference Report – Cystinosis Connect – Meet the Trustees: Will Newman – And more! To receive future […]

We published our first email newsletter in April 2022, this was sent to subscribers of our free mailing list and is also available to view at the link below. CFUK Newsletter – Spring 2022 This edition of our newsletter includes: – CFUK and Cystinosis Ireland Jointly Funding Two New Research Projects – Cystadrops Now Available […]

We are very excited to launch our new mailing list! By signing up for free at the link below you will receive our email newsletter to keep you up to date with the latest news, upcoming events, research opportunities and lots more! You’ll also be helping us to understand more about the cystinosis community as […]

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 of the newsletter is in the process of being distributed to Foundation members. If you do not receive your copy […]

Issue 20 (November 2011) 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). We would like to thank everyone who has contributed to its content. If you have not received your […]

The Cystinosis Foundation USA has released their July 2011 newsletter detailing their progress in funding research, support for organisations around the world and other activities. Read The Newsletter.

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.

Cystagon / Procysbi Survey Do you have experience of cystagon (mercaptamine), procysbi (cysteamine bitartrate), or both? [...] Read more...
CNE International Conference 2024 Cystinosis Network Europe and Cystinosis Foundation UK are delighted to announce the 2024 [...] 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...
Summer 2024 Newsletter The Summer 2024 edition of our email newsletter is available to view at the link below. CFUK [...] Read more...
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