Fanconi Hope is a registered national charitable trust set up by parents of Fanconi Anaemia (FA) affected children and clinicians with an interest in FA:
To support a UK Fanconi Anaemia National Registry so as to ensure Fanconi Anaemia affected children and their families are kept track of and provided with the best care.
To promote awareness and understanding of Fanconi Anaemia among affected families, the medical profession, and the general public.
To encourage translational research which may directly benefit Fanconi Anaemia affected children and their families.
To encourage research in the area of Fanconi Anaemia that may have benefit for the general public, e.g., in the treatment of cancers in general.
In 2008 three parents of affected children, Thomas Carroll, Richard Kawalek and Bob Dalgleish started the Fanconi Hope Charity to fund research into this disease, to help engender consistent best practice treatment across the UK by initiating and running an NHS FA Clinical Network and to provide much-needed support to affected families through the provision of information and improved family contact. The Charity is very fortunate to work under the patronage of The Duchess of Devonshire, who takes an active part in Annual Trustee meetings.
Due to the rarity of the disease Fanconi Hope has had to reach out internationally, with the US-based Fanconi Anaemia Research Fund (FARF) being our principal partner. FARF provides considerable support and guidance and we are able to use the services of their Scientific Advisory Board for Fanconi Hope-sponsored research projects in the UK.