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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 […]

Charity Trustees

The charity trustees include 3  parent representatives and 3 clinicians in the UK Fanconi Anaemia Clinical Network. Thomas Carroll, doctor Chairman  Consultant Neurosurgeon and FA parent Sheffield Bob Dalgleish, hospital Secretary FA parent Portsmouth Louise Parry, Treasurer FA parent Manchester Dr Mary Morgan,  Clinician Trustee Consultant Paediatric Haematologist Southampton Dr Alan Gilliespie,  Clinician Trustee Consultant […]

The Charity

Please see posts at foot of page for the latest Charity News Fanconi Hope is currently fundraising for further research, in particular for a 3 year Study into the Long term Effects of Fanconi Anaemia to be led by Manchester University  and funded by Fanconi Hope.  This study will fund a UK FA Coordinator who will create and maintain […]

£8000 Grant Awarded to Fanconi Hope!

  We are pleased to announce that we have been awarded a grant of £8000 by the Duke of Devonshire’s Charitable Trust to help fund our Study into the Long Terms Effects and Treatment of Fanconi Anaemia, led by Dr Stefan Meyer in Manchester. This grant will make a significant contribution towards  the consolidation of […]

In Memory of Joel Walker

We have received this tragic news from Nigel Walker, who now lives in Plano, Texas about his son Joel who had Fanconi Anaemia. This follows the earlier loss of his daughter Joanne, also to FA. “It is with an even heavier heart that I send this note to everyone tonight.  Around 7:30 pm on 1st Nov 2016 we […]

Facilities, Days Out, Holidays etc

Wish Granting Organisations Make a Wish Foundation UK: Make-A-Wish grants magical wishes to children and young people fighting life-threatening illnesses. Make-A-Wish was founded in the UK in June 1986 and, since then, we have granted over 5,300 wishes. At any given time, over 20,000 children in the UK are living with life-threatening conditions and our […]

Benefits, Entitlements and Grants

Our role in Fanconi Hope is to help guide people towards organisations that specialise in the right type of support. Organisations that can help with Benefit Claims It is certainly the case that the benefits system has been tightened up as of late 2012, and we have evidence from one of the hospitals involved in disability living allowance […]


Media Fact Sheet about Fanconi Anaemia and about the charity Fanconi Hope can be downloaded: Fact Sheet. Contact details are included in the fact sheet, or you can contact us via the website. To download logo, right-click image and save picture as…

Fanconi Hope Affiliations

Fanconi Hope is affiliated in various ways to a number of organisations: British Society for Gene Therapy (BSGT)  The aim of the British Society for Gene Therapy is to accelerate scientific progress and promote ethical and efficient transfer of gene- and cell-based technologies from the laboratory into the clinic. Gene and cell therapy is an area where […]

Remember a Loved One

Would you like to remember a loved one with a free online tribute page? Fanconi Hope has partnered with Much Loved – a charity working to help bereaved people – to enable you to create a sensitive, personalised and lasting online memorial to your loved one. The easy-to-use website allows you and your friends and […]