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Charity Organisation and Finances

Charity Trustees The charity trustees include 3 parent representatives and 3 clinicians with an interest and involvement in FA. Thomas Carroll, Chairman  Consultant Neurosurgeon and FA parent Sheffield Bob Dalgleish, 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 […]

Fanconi Hope Fanconi Anaemia Conference and Family Fun Day – Joining Instructions

Over 100 people are attending this event – families, health professionals, researchers and charity helpers. Detailed Joining Instructions for the event have now been sent out to all participants by email. If you haven’t received the email you can read the Joining Instructions here. There is also a call for participation in a Study to […]

Publications and Directory

Fanconi Hope Information Sheets:- Information Sheets are being prepared by Fanconi Hope on a number of topics. If you have suggestions for further topics please contact us. About Fanconi Anaemia About Fanconi Hope Insurance for individuals affected by Fanconi Anaemia. Pre-implantation Genetic Diagnosis/HLA-selection/In vitro fertilisation in Fanconi Anaemia . Additional Vaccinations for FA affected individuals in […]

About Us

More about Fanconi Hope 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 […]

Fanconi Hope FA Conference and Family Fun Day Invitation

If you or a family member is affected by Fanconi Anaemia (FA) in the UK or Ireland, you are cordially invited to attend our Fanconi Anaemia Conference and Family Fun Day to be held at Twycross Zoo Conference Centre near Tamworth, northeast of Birmingham, on Saturday 14th October 2017 from 10.30am to 5pm, followed by […]

A Race for Life. Steve Moore Runs the London Marathon for Fanconi Hope

Thanks to Steve Moore for running the London Marathon this year for Fanconi Hope, raising over £770 so far through his JustGiving page. And thanks to both Steve Moore and Sasha Gillespie for raising awareness of FA in a great article published 2 weeks ago in the Belfast Telegraph called ‘ A Race for Life’ which you can download […]

£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 […]