UK Fanconi Anaemia Registry Project Extended to July 2024!

Beth Lee, our Research Coordinator

We are delighted to announce that thanks to your support in raising funds for Fanconi Hope, our UK FA Registry Project has now been extended to Jul 2024!

The project, (full title “Observational study for long term health implications of individuals affected by Fanconi anaemia) , is a crucially important long term activity to track the health of FA patients over their lives, so that we can create the evidence to establish and justify the best treatments for Fanconi Anaemia across the UK and Ireland.

For this study to be truly effective we need the participation of as many FA patients as possible. If you are in the UK or Ireland living with FA we would therefore encourage you to register for the study here.

Beth Lee, a highly experienced FA nurse in Manchester, is your link with the project.

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