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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 […]

Good News about the new UK FA Registry!

A Message from Beth Lee, our Fanconi Hope Research and Liaison Coordinator, about the new UK FA Registry and how you can participate:   It was lovely to meet many of you at the Family Day in October.  As discussed on the day, we would like to start the Fanconi Hope funded registry. This study […]

Publications and Directory

Key Documents:- Fanconi Hope: UK FA Standards of Care Fanconi Anemia Research Fund: Fanconi Anemia Guidelines for Diagnosis and Management 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 […]

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 […]

£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 […]

Fundraising Ideas

Here are some ideas to help you decide how to fundraise. We can provide T shirts, collection tins and buckets etc free to fundraisers. Find out more here. Shop online at EasyFundraising.  Fanconi Hope receives a percentage and it costs you no more than if you had visited the online stores directly Purchase CDs, DVDs, books, insurance […]

Support Available

Support services have been divided into 3 categories. Counselling and Advice (this page) Financial Support (Benefits, Entitlements and Grants): link Facilities, Days out, Holidays etc available free of charge: link Counselling and advice There are many options available for free counselling and advice in the UK, including the following: Your GP The Fanconi Anemia Research Fund’s (FARF) family support […]