Good News about the new UK FA Registry!

Beth Lee – Fanconi Hope FA Coordinator

A Message from Beth Lee, our Fanconi Hope Research and Liaison Coordinator, about the new UK FA Registry and how you can participate:

It was lovely to meet many of you at the Family Day in October.  As discussed on the day, we would like to start the Fanconi Hope funded registry. This study will be used to gather data about the care of FA patients across the UK and will give us insights into the care given and help us to improve care, especially as FA patients get older.
The good news is we now have ethical approval to start the study. Therefore, I will be sending out all the information about the Fanconi registry to you. Please read through it carefully and if you would like to take part all you need to do is give your consent. We can then arrange a phone call and talk through the questions together or you can send me the information required, whichever option is best for you.
If the charity does not have your home address or email and you would like to be a part of this study, please let us know so that you can be involved.
I look forward to hearing from you,
Beth Lee Fanconi Hope Research and Liaison Coordinator
You can contact Beth at She will be delighted to hear from you!
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