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Please say “Yes” to our emails! Because data protection rules are changing this month, we need you to give us permission to continue sharing our news and updates with you. We will no longer be able to contact you unless we have your express consent and you tell us how you would like to be […]

Fanconi Hope Conference and Family Day Oct 17

You can download the following presentations:- 1 Bob Dalgleish – Introduction 2 Stefan Meyer – Introduction to FA 3 Marc Tischkowitz – Genetics – All you need to know 4 Phil Ancliff – Gene Therapy 5 Nigel Jones – Biological Aspects of FA 6 Josu de la Fuente – Haemopoietic stem cell transplantation in FA […]

International FA Gene Therapy Working Group Meetings 2011 onwards

  Meeting  Date   Venue  Agenda Attendees   Details  8  16 Nov 17 Heidelberg, Germany  tbc  tbc  7  7 Oct 16 Ciemat, Madrid Agenda   Thanks to Dr Juan Bueren and his team in Ciemat for hosting the 7th Annual International Gene Therapy Working Group Meeting held on 7th October 2016 in Madrid.The Working Group brings together world […]

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 […]

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 […]

International FA Gene Therapy Working Group – First Meeting: 2010

International Fanconi Anaemia Gene Therapy Working Group –  “a real platform for the accelerated development of collaborative clinical studies.” Reported in Nature: Molecular Therapy “Stem Cell Gene Therapy for Fanconi Anemia: Report from the 1st International Fanconi Anemia Gene Therapy Working Group Meeting” : Jakub Tolar. Download the full paper here . Report from First […]

Fundraising Resources

The following information may be of help. If you would like to take advantage of any of these materials please contact Bob Dalgleish.    T Shirts – Free to FA patients, families and fundraisers: Available in sizes : Child age 9-11, Adult Small/Med/Large/Extra Large.  Please contact us to order Available to buy for others at […]

Contact Us

You can contact us by phoning 0300 330 1410, writing to Bob Dalgleish at Fanconi Hope, PO Box 905, Southsea, Hants, UK PO1 9JG or by completing and submitting the form below. We will endeavour to respond to all enquiries within 7 days. If you have trouble with the form, please email directly to rad at […]

Fundraising and Donating

Fanconi Hope is currently fundraising for further research, in particular to prolong a 3 year Study into the Long term Effects of Fanconi Anaemia which is being led by Manchester University  and wholly funded by Fanconi Hope.  This study funds a UK FA Coordinator, Beth Lee, who will create and maintain a patient-led UK National Patient Registry in […]