How You Can Help
- We aim to build up a register over time of all those affected in the UK and Ireland. Please register your interest by e-mailing, calling, or writing to us (See details below). ‘Membership’ is free and we will endeavour to keep you informed of developments in the future.
- Please publicise the organisation among other FA affected families you may have met, e.g., by phoning them or by forwarding this e-mail on.
- Let us know if you want to be more actively involved, in particular if you feel you have a particular story to tell or skill to contribute.
- Ask your clinician (e.g. paediatric haematologist) if he/she is a member of the UK and Ireland FA Clinical Network and if not, suggest they contact us, or send us their details and we will contact them.
- Consider participating in fundraising activities. You can make use of our resources here or contact us for further assistance.
- Ask your clinician to sign you up to the National Registry as and when it becomes live as this will ensure that the care being provided meets an agreed ‘best care’ national standard.
- Set up bone marrow donor registration clinics by contacting the Anthony Nolan Trust and let us know of such clinics as we may be able to be of assistance in their promotion.
- We would also invite any families to contact us in confidence in the event of any NHS funding difficulties experienced concerning aspects of their care specific to Fanconi Anaemia such as HPV vaccination, complementation group/mutational analysis, and pre-implantation genetic diagnosis/HLA-typing/IVF ‘saviour sibling’, as we would consider writing as a national organisation in support of any such funding application to a local primary healthcare trust or raising such difficulties as an issue at the next UK & Ireland FA Clinical Meeting.
- By E-mail here
- By Phone: Call Bob Dalgleish on 0845 271 2811
- By Post: PO Box 905, Southsea, Hants, UK PO1 9JG