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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 […]

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 […]

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 […]

About Fanconi Anaemia

What is Fanconi Anaemia? FA is a rare, cancer-predisposing disorder affecting about 150 or more families in the UK (the true extent is unknown) manifested by: A variable presence of congenital anomalies in up to 70% of cases (e.g., thumb and kidney abnormalities) Progressive bone marrow failure in childhood usually leading to haematopoietic stem cell […]

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 […]

Previous Fanconi Hope-Sponsored Research

 2011 Research Fanconi Hope awarded a grant of £20,000 to Dr Ketan J Patel,  MD, PhD, from the Laboratory of Molecular Biology, Cambridge University towards his ongoing work on a research project entitled:  Reconstituting and Dissecting Monoubiquitination in the FA Tumor Suppressor Pathway. Dr Patel, who is recognised as a world expert in molecular research […]

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 […]