CNE Conference Update – December 2023
We are looking forward with excitement to the CNE International Conference in Manchester that we are hosting on 26 and 27 July 2024. The conference will be based at a central Manchester hotel and we…
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…
CNE International Conference
The Cystinosis Network Europe (CNE) International Conference will be hosted by Cystinosis Foundation UK in Manchester, England, from 25th to 27th July 2024. The scientific meeting will be held on 25th July, with the family…
Novartis Gene Therapy Update
We have received this message from Novartis regarding their gene therapy program for cystinosis: “Dear Cystinosis Community, In May 2023, Novartis acquired the investigational autologous hematopoietic stem cell (HSC) gene therapy program for the treatment…
Contact: For Families With Disabled Children
We’ve recently discovered this organisation that offers a wealth of information, advice and support, for example on subjects such as: Benefits and tax credits; Early years support; Social care; Education and learning. They run a…
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…
Spring 2022 Newsletter
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…
Gene Therapy Trials Update
If you are following the gene therapy trials in the USA you will have seen that the 6th and final patient was dosed at the end of October. AVROBIO, the company that is developing the…
History of Cystinosis – UK Disability History Month
by Ami Froehlich, Trustee 18 November to 18 December marks Disability History Month, with this year’s theme focused on Disability, Health and Well Being. UK Disability History Month (UK DHM) celebrates historical contributions of people…