Our Achievements

Sep 2025 – CFUK attendance at the Chronic Kidney Disease Summit in Edinburgh, and profile of cystinosis from two families and one clinician in Kidney Research UK’s report: Collectively common: the devastating impact of rare kidney diseases in the UK.
Jun 2025 – CFUK stand at European Working Group on Psychosocial Aspects (EWOPA) of Children with Chronic Kidney Disease annual meeting to raise awareness.
Mar 2025 – Meeting with clinical nurse specialists across hubs and hospitals to share information and feedback.
Nov 2024 – Released research results of a joint survey on the impact on quality of life of different cysteamine treatments, conducted with Metabolic Support UK and Kidney Research UK.
Jul 2024 – Partnered with CNE to host the CNE International Conference in Manchester, UK, bringing together patients, families, clinicians, researchers, charities and pharmaceutical representatives.
Oct 2023 – Chosen as hosts of the CNE International Conference in 2024.
Sep 2022 – Supported the process that led to the commissioning by NHS of three national designation centres or ‘hubs’ for patients in England.
May 2022 – Contributed as a patient groups towards the approval of Procysbi in Wales.
Apr 2022 – Launch of Newsletter series for community members.
Nov 2021 – Hosted a virtual webinar open to all.
Nov 2021 – Collaboration with Cystinosis Ireland to jointly fund two new research projects.
Jul 2021 – Contributed as a patient group towards the approval of Cystadrops for routine usage in UK.
Nov 2020 – Started our Cystinosis Connect series of virtual meetings for our community.
Mar 2019 – £1.6m MRC Grant awarded to Sunderland University drug research for cystinosis.
Dec 2018 – Founder, Jonathan Terry, awarded MBE in Queen’s 2019 New Year’s Honours List.
Feb 2017 – Collaborated with Cystinosis Ireland and Cystinosis CRN on 2017 Seedcorn Funding Programme.
Nov 2016 – Further funding allocated to CF10 development at Sunderland University.
Jul 2014 – Jointly hosted 8th International Cystinosis Congress with Cystinosis Research Network in Manchester, UK.
Jun 2013 – New website launched.
Mar 2013 – Further funding allocated to Sunderland drug research.
Nov 2012 – £125,000 additional funding for the pro-drug research project at Sunderland University.
Sep 2011 – £12,608 in funding for the pro-drug research project at Sunderland University.
Apr 2011 – £12,608 in funding for the pro-drug research project at Sunderland University.
Oct 2010 – Purchased a new High Pressure Liquid Chromatograph unit for the University of Sunderland to assist their research.
Sep 2010 – Funding for PHD student Barbara Buchan of The Robert Gordon University to attend the International Cystinosis Conference in order to present results.
Jan 2009 – Research grant of £93,000 over 3 years to the University of Sunderland to pursue development and testing of Prodrug formulations.
Nov 2008 – Research grant of £26,335 to the Robert Gordon University, Aberdeen for research to develop suppository delivery of active in Cystagon and work on eyegels.
2007 – Fundraising Standards Board Approval obtained.
2006 – Committed £22,250 for one year Research Assistant to continue Produg work at University of Sunderland.
2006 – Reached £100,000 Research Fund target in December. Launched appeal for 2nd £100,000.
Jul 2005 – £2,542 grant to the Cystinosis Research Group at the Robert Gordon University, Aberdeen for purchase of equipment.
2004 – Launch of £100,000 Research Fund Appeal
2004 – National Conference at BioCity Nottingham.
2003 – 3-year research grant to the University of Sunderland to pursue the formulation of Prodrugs.
2002 – First Research Grant of £12,000 to the University of Sunderland for preliminary study into a prodrug approach to the delivery of the active ingredient in Cystagon.
2001 – National conference in Walsall. William van’t Hoff agreed to become President of the Foundation.
Apr 1999 – Launch conference.
Mar 1999 – Charity status granted.