Clinicians and Researchers
Please see posts at foot of page for the latest Clinician/Researcher News
UK and Ireland Fanconi Anaemia Clinical Network
Contact details of the current FA Clinical Network . The map shows the locations of the current membership.
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)
The creation of a national Fanconi Anaemia Registry is being started in 2015, through an “Observational study for long term health implications of individuals affected by Fanconi anaemia” funded by Fanconi Hope . The principals in this study are:-
- Stefan Meyer MD PhD FRCPCH, Senior Lecturer / Consultant Paediatric Oncologist, University of Manchester, Royal Manchester Children’s and Christie Hospital, Manchester Academic Health Science Centre
- Kate Chandler, Consultant Clinical Geneticist, Manchester Centre for Genomic Medicine, Central Manchester University Hospitals NHS Foundation Trust, Saint Mary’s Hospital
- Marc Tischkowitz PhD MRCP, Department of Medical Genetics, University of Cambridge, Addenbrooke’s Hospital
UK Standards of Care Document
The UK & Ireland FA Clinical Network has now published the Fanconi Anaemia Standards of Care document (published 2009) 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.
US Guidelines for Diagnosis and Management (Produced by the Fanconi Anemia Research Fund)
Fanconi Anemia: Guidelines for Diagnosis and Management, Fourth Edition, 2014 – These guidelines came out of a Consensus Conference held by the Fanconi Anemia Research Fund in 2013. This publication is for physicians who provide primary care for FA patients, as well as patients and families who wish to develop a more comprehensive medical understanding as they work to secure optimal treatment through consultation and appropriate referral.
International Fanconi Anemia Treatment and Testing Resource Guide
The International Fanconi Anemia Treatment and Testing Resource Guide 2015 is now available here.
Clinicians and Researchers News
7th Annual International Gene Therapy Working Group Meeting
Thanks to Dr Juan Bueren and his team in Ciemat for hosting the 7th Annual International Gene Therapy Working Group Meeting being held on 7th October 2016 in Madrid. The Working Group brings together world experts in Fanconi Anaemia, Gene and Cell Therapy, Gene Editing, Academic Research and Vector and Cell Manufacture to accelerate the move from research […]
October 7, 2016