Newsletter – Summer 2026
Hello everyone and welcome to our 2026 Summer Newsletter. I hope everyone has managed to keep well hydrated (maybe not as much as the World Cup Football teams) in this unusually warm summer. A few…
Newsletter – Spring 2026
Hello everyone and welcome to our 2026 Spring Newsletter Given the recent weird weather changes perhaps this should be renamed the ‘all-seasons’ newsletter! Despite the setbacks with trying to make Procysbi available in the whole…
Newsletter – Winter 2025/26
Hello everyone and welcome to 2026 and our winter newsletter. They say never start with an apology, but here goes. Although we aim to get this newsletter out quarterly, due to unfortunate circumstances, this edition has slipped. The…
Newsletter – Autumn 2025
Hello everyone and welcome to our autumn newsletter. We have some fantastic stories from fundraisers over the summer and our CFUK T shirts have certainly covered some miles. All we can say is ‘Wow’ and thank…
Newsletter – Summer 2025
Hello everyone and welcome to our Summer newsletter. Quite a bit of change with our trustees. We’re sad to say goodbye to one of longest serving trustees, Neil Sugden, who has been with us since 2011…
Newsletter – Spring 2025
The Spring 2025 edition of our email newsletter is available to view at the link below. CFUK Newsletter – Spring 2025 This includes: To receive future editions of our email newsletter please subscribe to our mailing…
Summer 2024 Newsletter
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…
Summer 2023 Newsletter
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…
Winter 2022 Newsletter
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…
Summer 2022 Newsletter
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…