The UK Fanconi Anaemia Clinical Network is a recently formed group of NHS clinicians, including patient/family representation, who are responsible nationally for providing treatment for the rare genetic disorder Fanconi Anaemia. 

The NHS clinicians involved are throughout the UK and include paediatric haematologists, clinical geneticists, head & neck cancer surgeons and congenital hand surgeons. 

The aims of the Clinical Network are to:-

• Provide information concerning Fanconi Anaemia to UK doctors and patients,

• Make doctors and patients aware of the specialist Clinical Network,

• Promote a newly formed NHS National Registry for Fanconi Anaemia

• Provide appropriate patient/family support.

For Clinicians: More about the Clinical Network and contact details

The National Registry

The UK Fanconi Anaemia National Registry will be set up by the UK Fanconi Anaemia Clinical Network, when sufficient funds have been raised, to record the medical problems suffered by individuals in the UK affected by Fanconi Anaemia, and their families.  The purpose of the National Registry will be to ensure and share best quality of care, and support audit and service evaluation.  Contact details of Fanconi Anaemia affected individuals and their families will be kept by the Registry to enable new developments in treatment and patient/family support to be passed rapidly and directly to patients as well as to their doctors.  The Registry will also facilitate circulation of research studies and treatment trials to patients, inviting their participation.

For Parents

Whilst funds are being raised for a National Registry,  a contact list of affected families in the UK is being set up.

If you wish to make contact with other families or are willing to help with fundraising or other activities please send your contact details to Bob Dalgleish by or writing to 16 Andover Road, Southsea, Hants, PO4 9QG.

The Children with Fanconi Anaemia Charity has now been set up to fund research and the creation of the National Registry.