About the Charity and Progress to Date

The Fanconi Hope Charitable Trust

Three parents of affected children, Thomas Carroll, Richard Kawalek and Bob Dalgleish started the Fanconi Hope Charity in 2008, 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 to reach out internationally, with the US-based Fanconi Anaemia Research Fund (FARF) being our principal partner. FARF provide considerable support and guidance and we are able to use their Scientific Advisory Board for Fanconi Hope-sponsored research projects in the UK.

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:

Bringing Clinicians Together to Share Best Practice:

Promoting Research:

Bringing Families Together:

The Fanconi Hope Charity and Fundraising Activities:

Raising Awareness

 

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