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 – a rare, life-limiting genetic disorder.
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.
Registration for the UK Fanconi Anaemia Conference and Social Weekend from Fri 13th to Sun 15th September 2019 is now open! Read more about it
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.
10
years
It’s hard to believe but it’s now 10 years since Fanconi Hope was formed, with the belief that we could have a big impact on many lives.
Our Work
Although the charity is small and staffed by volunteers in their spare time, Fanconi Hope has been able to make significant progress in a number of areas:
- Raising Awareness
- Bringing Families Together
- Promoting Research
- Bringing Clinicians Together to Share Best Practice
£275,000+
Raised for Research and Family Support
£164,000+
in Sponsored Research Projects
Fanconi Hope is currently fundraising to prolong a 3 year Study into the Long term Effects of Fanconi Anaemia which is being led by Manchester University and wholly 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.
Join the UK FA Register
To all patients and families in the UK living with FA, find out more about the Long Term Health Implications of Fanconi Anaemia.
"I believe that we have already shown that this is possible but as the parent of a child with FA and as Chairman of Fanconi Hope I will not rest whilst there is the opportunity for improved treatment for all and ultimately, a cure."~ Bob Dalgleish, Chairman (Fanconi Hope)