Clinicians and Researchers
UK and Ireland Fanconi Anaemia Clinical Network 
Contact details of the current Clinical Network Membership. The map shows the locations of the current membership.
We are pleased to welcome our latest member, Dr Melanie Cotter, a paediatric haematologist in Dublin, working in both Our Lady’s Children’s Hospital Crumlin and Children’s University Hospital Temple Street.
If you would like to join, please contact us
UK Fanconi Anaemia Research Network
The researchers detailed in this UK Fanconi Anaemia Research Network list have produced research relevant or relating to Fanconi Anaemia. Abstracts (or summaries) of papers that they have published in the medical literature can be found by clicking here and performing an author search.
If you are a researcher in the UK or Ireland and wish to be listed as part of the UK Fanconi Anaemia Research Network, please contact us.
UK and Ireland Fanconi Anaemia Registry (UKIFAR)
A Fanconi Anaemia Registry is being set up by the Genetics & Epidemiology Unit at the University of York to improve the quality of care and survival of patients with Fanconi Anaemia (FA) in the UK and Ireland. More details here.
UK Standards of Care Document
The UK FA Clinical Network has now published the UK Fanconi Anaemia Standards of Care Guidelines, to serve as a benchmark for provision of care, clinical audit, and the UK and Ireland Fanconi Anaemia Register (UKIFAR) project. Printed copies are available on request.
Current US and Dutch Standards of Care documents can be found here.
Children’s Hand Surgeon Guidance Document
A guidance document for children’s hand surgeons concerning congenital hand anomalies in Fanconi Anaemia has been prepared by by Ms Grainne Bourke, Consultant Plastic Surgeon, Leeds General Infirmary, as has an A4 flowchart poster titled ‘Has this child got a Thumb or Radial Ray Abnormality?’ is available here
Nutritional Management
A clincians’ guide to Nutritional Management of Patients with Fanconi Anaemia has been prepared by Evelyn Ward, Paediatric Dietitian, St James’s University Hospital, Leeds, as has a guide for families; Advice on Nutritional Problems for Patients with Fanconi Anaemia
Information Sheets for Families
A set of information sheets on a variety of topics has been prepared for families.
Clinicians and Researchers News
Countdown to £100,000!
We are now on the countdown to raising our first £100,000, with only £6000 to go!
This amazing figure, achieved in less than two years, is due to the magnificent efforts of our FA families and friends across the UK and Ireland.
This has enabled us to publish the first UK Standards of Care, hold Clinician and Family [...]
July 17, 2010
OHSU joins forces with UO, Harvard to accelerate Fanconi anemia research
National Institutes of Health grant expands OHSU’s 15-year research effort into the cause, prevention, treatment of the disease.
Oregon Health & Science University is partnering with the University of Oregon and Harvard Medical School to expedite basic science research into new and existing drugs and compounds that may prevent the complications associated with Fanconi anemia, an [...]
June 1, 2010
First UK FA Research Conference Held
Many thanks are to due to Dr Helen Walden of Cancer Research UK for organising the first UK FA Research Conference, held on May 24th.
A big thank you also to Cancer Research UK for funding the event. In supporting this event and in funding FA research, Cancer Research UK has shown its commitment to FA [...]
May 26, 2010
British Society for Gene Therapy Conference Report
Thomas Carroll and Bob Dalgleish of Fanconi Hope attended the British Society for Gene Therapy’s Annual Conference in London on March 29th. Thomas Carroll spoke at the invitation of the BSGT president, Professor Adrian Thrasher on the Public Engagement Day on ”Fanconi…hope: from ‘Saviour Sibling’ to gene therapy”. Thomas attended for the whole duration of the 3 [...]
April 23, 2010
Fanconi Hope is one of the Sponsors of BSGT Conference
Fanconi Hope is one of a number of groups sponsoring the British Society of Gene Therapy Annual Conference to be held in London, 29th -31st March. The event is chaired by Professor Adrian Thrasher, the BSGT President, who some of you may recall, gave a presentation at our last Family Meeting.
Thomas Carroll, our Chairman, will be [...]
February 28, 2010
New Additions to UK FA Research Network
We are pleased to welcome our three latest Research Network Members, Prof Majlinda Lako, Peter McHugh and Dr Michael Carty:-
Prof Lako’s group at Newcastle University focuses their research on understanding of the basic biology of human embryonic stem cells, their self-renewal and differentiation to haematopoietic, retinal and corneal lineages.
Peter McHugh runs the DNA Damage and [...]
February 24, 2010
FancL Protein Structure Unravelled
Research just published in Nature Structural and Molecular Biology by Dr Helen Walden of Cancer Research UK (and a member of our UK FA Research Network) describes how her team have unravelled the structure of the FancL protein.
Dr Walden says “We have taken the first full atomic snapshot of a protein in this cell repair pathway, [...]
February 15, 2010
Case-by-Case Licensing of Preimplantation Genetic Diagnosis
The Ethics and Law Advisory Committee (ELAC) have now considered the outcomes of the consultation event and have made recommendations to the Authority for the future licensing of preimplantation tissue typing. In summary, ELAC have recommended that for preimplantation tissue typing a case-by-case approach should be maintained for the immediate future, that there should be a [...]
February 6, 2010
First Fanconi Hope Research Grant Awarded
Fanconi Hope is pleased to announce that in collaboration with the US Fanconi Anemia Research Fund we have provided a grant of £30,000 for the first UK research programme relating to the use of stem cell technology in conjunction with gene therapy which may in future provide a cure for Fanconi Anaemia; ‘Using iPSC technology [...]
January 16, 2010
Reviewing the case-by-case approach to the licensing of Preimplantation Genetic Diagnosis
An HFEA Consultative Meeting was held on 1st Dec 2009 to review the licensing conditions for PGD for later onset, lower penetrance conditions and for HLA tissue typing. See Agenda and Discussion document – case by case approach to PGD
The meeting was attended by around 50 people with speakers for and against change. Attendees with [...]
December 5, 2009
