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For Patients and Families

We aim to provide support for families and individuals affected by FA by providing information and also guidance on where additional support and other services may be found. We now have a UK FA Coordinator, Beth Lee, to help you in dealing with all aspects of Fanconi Anaemia. Please email Beth and she will either reply by email or […]

http://www.fanconihope.org/home/families-and-affected-individuals/

Observational Study for Long Term Health Implications of Individuals Affected by Fanconi Anaemia

More about the Observational study for long term health implications of individuals affected by Fanconi Anaemia and its Objectives We have funded this study because although guidelines for the management of FA are available for clinicians and patients, these mainly address FA only in childhood. The extent to which these guidelines are implemented is not […]

http://www.fanconihope.org/research/observational-study-for-long-term-health-implications-of-individuals-affected-by-fanconi-anaemia/

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 […]

http://www.fanconihope.org/research/international-fa-gene-therapy-working-group/international-fa-gene-therapy-working-group-meetings-2012-onwards/

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 […]

http://www.fanconihope.org/publications-and-directory/

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 […]

http://www.fanconihope.org/home/about-us/

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 […]

http://www.fanconihope.org/home/about-us/charity-organisation-and-finances/

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 […]

http://www.fanconihope.org/home/more-about-fa-and-fanconi-hope/

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 […]

http://www.fanconihope.org/2017/06/23/fanconi-hope-fa-conference-and-family-fun-day-invitation/

Fanconi Hope Announces Appointment of New UK FA Coordinator

  Fanconi Hope has taken an important step forward in support of improved care for the Fanconi Anaemia (FA) community in the UK by funding a long term study through Manchester University called: “Observational study for long term health implications of individuals affected by Fanconi Anaemia”. One of the first activities in this study, which started in […]

http://www.fanconihope.org/2016/07/18/fanconi-hope-announces-appointment-of-new-uk-fa-coordinator/

Our UK FA Liaison and Research Coordinator

Fanconi Hope has taken an important step forward in support of improved care for the Fanconi Anaemia (FA) community in the UK by funding a long term study through Manchester University called: “Observational study for long term health implications of individuals affected by Fanconi Anaemia”. One of the first activities in this study, which started in May […]

http://www.fanconihope.org/home/families-and-affected-individuals/uk-fa-liaison-and-research-coordinator/