We Are Fanconi Hope

We are a registered national charitable trust set up by parents of Fanconi Anaemia (FA) affected children and clinicians with an interest in FA.

Fanconi Anaemia (FA) is a rare, life-limiting genetic disorder causing bone marrow failure in children and a predisposition to gynaecological, head and neck cancers, together with other complications both in childhood and in later life.

Join the UK Fanconi Anaemia Registry

Help us uncover and document the long-term health implications of Fanconi Anaemia by regularly interacting with our experts. They can then generate the information that is needed to ensure best practice care for every FA patient across the UK.

Make A Difference

Our work is made possible through the generous donations and funds raised by our supporters, FA families, their friends and relatives across the UK. Help us further research into this genetic condition and support families and individuals affected by Fanconi Anaemia.

Latest News

Rare Voices Report Webinar

At the start of 2023, Fanconi Hope and our partners in the Together for Healthy Marrow Alliance concluded our National Community Survey into the experiences of those with rare conditions affecting the bone marrow. This presentation shares some of the main findings from the Rare Voices report. You can watch Maria Piggin of the PNH

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Emotional Wellbeing Support

As part of the ‘Better Together for Healthy Bone Marrow’ collaboration between the six charities listed below, the Psychology Team can offer specialist emotional wellbeing support to members of the Better Together communities facing emotional challenges relating to their or their loved one’s medical condition.  This support is delivered by Lesley (clinical psychologist) and Amy (psychotherapist), who both specialise in supporting

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Benefits Advice and Support

With thanks to The National Lottery Community Fund, who have funded our Better Together for Healthy Marrow Alliance Project, we are pleased to be able to bring you access to a benefits advice and support service, to help you understand and navigate the benefit system, in relation to your medical condition. Watch the recent 2024

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Fanconi Hope Oral Microbiome Pilot Study

We are delighted to announce that we will shortly be embarking on a pilot research programme to characterise the oral microbiome in people with Fanconi Anaemia. The oral microbiome is a complex community of bacteria and other micro-organisms living in your mouth, playing a crucial role in digestion and protecting against disease. There is increasing

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It’s hard to believe but it’s now 15 years since Fanconi Hope was formed, with the belief that we could have a big impact on many lives.

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Raised for Research and Family Support
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in Sponsored Research Projects
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The UK and Ireland Fanconi Anaemia Registry

Fanconi Hope has fully funded the creation and maintenance of the first UK FA Registry, to track patients’ health over many years as part of a long-term study. For this to be effective, we need you as patients and parents to be involved, contributing to the Registry on a regular basis, by interacting with Beth Lee, our FA Research Coordinator who is Fanconi Hope’s direct link to the Study.

Register below for more information.
All information and services are free, and your information is kept confidential.

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Join our mailing list and we’ll keep you updated with our work, special events and ways in which you can make a difference. Your email will not be shared.