FA patients, their families and relatives have helped fundraise for Fanconi Hope to allow us to donate over £160,000 to UK Fanconi Anaemia research projects.

Fanconi Hope, in conjunction with the Fanconi Anemia Research Fund, initiated and co-sponsored an International FA Gene Therapy Working Group Meeting in London in Nov 2010 aimed at expediting the transition from gene therapy research for Fanconi Anaemia into clinical trials worldwide. This was described by the host, Prof Adrian Thrasher of UCL as “a real platform for the accelerated development of collaborative clinical studies.” and a report from the meeting has subsequently been published in Nature. The Working Group Meetings, chaired by Prof Jakub Tolar, have continued on an annual basis.

In 2015 Fanconi Hope commenced funding of a 3 year (initially) Study into the Long Term Effects of Fanconi Anaemia led by Manchester University and funded by Fanconi Hope. This study funds a UK FA Coordinator, Beth Lee, who will create and maintain a patient-led UK National Patient Registry in order to improve patient care and facilitate research. The Coordinator acts as a point of contact for patients & families, and clinicians & researchers.