Families and Affected Individuals
Please see posts at foot of page for the latest news for families and affected individuals.
We aim to provide support for families and individuals affected by FA by providing information and also guidance as to 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 arrange to call you at a mutually convenient time, whichever you prefer.
You can read more about Beth and her role here
Fanconi Hope works in partnership with the US-based Fanconi Anemia Research Fund (FARF), the largest and longest standing FA support organisation and shares many of their resources. Please refer to their website for further information.
Please note that Fanconi Hope is run by a number of FA parents in their own time. There are no employed administrative staff or professional counsellors. We are happy to be contacted by email/phone and to share our experiences. However, we are not in a position to provide professional counselling, advice, or ongoing support, and as with all FA-affected families, we are also having to deal with the personal challenges that FA presents.
There are many options available for free professional support, counselling and other services in the UK. See Support for Affected Families page for more information.
Key documents you should know about:
Contacting Others Affected by FA
If you wish to be put in touch with others affected by FA in the UK and abroad, FARF maintain a worldwide directory of such families, including many in the UK, which is updated on a regular basis. You can register with FARF here . Please also let us know if you would like to contact others or would like them to be able to contact you.
- Fanconi Hope has an open Facebook page where you can interact with other FA families and Fanconi Hope supporters.
- FARF has a public Facebook page for information sharing and a ‘closed’ Facebook Group for more private discussions amongst patients and families worldwide. FARF also manages an E-mail Support Group which allows FA families to exchange questions and information with other FA families. However, most people now use the closed Facebook Group.
FARF holds an annual family meeting in the summer on the East Coast of the USA called Camp Sunshine at which families from all over the world are eligble. Attendance is free and help with travel costs may be possible for first time attendees. For details of this year’s event please see the Events Page. Fanconi Hope holds meetings in the UK on an ad hoc basis. It is expected that one if not two meetings will be held during 2013.
Fanconi Hope Information Sheets
Fanconi Anaemia National Registry
Fanconi Hope is funding a project in 2015 to be led by Manchester University to create and maintain a UK-based Registry, the aim of which is to help improve care and enable more research to be conducted in the UK. More information available soon.
International FA Gene Therapy Working Group
The International Fanconi Anaemia Gene Therapy Working Group, organised and funded jointly by the Fanconi Hope Charitable Trust and the Fanconi Anemia Research Fund (FARF) was set up to bring together leading Gene Therapy and Fanconi Anaemia experts from across the globe to create an action plan for gene therapy trials in Fanconi Anaemia. The group is chaired by Prof Jakub Tolar from the University of Minnesota. More information can be found in this section.
£8000 Grant Awarded to Fanconi Hope!
We are pleased to announce that we have been awarded a grant of £8000 by the Duke of Devonshire’s Charitable Trust to help fund our Study into the Long Terms Effects and Treatment of Fanconi Anaemia, led by Dr Stefan Meyer in Manchester. This grant will make a significant contribution towards the consolidation of […]
March 19, 2017
Save the Date for FA Conference and Fun Day!
Save the Date! Saturday October 14th 2017 Fanconi Anaemia Conference and Fun Day Organised by Fanconi Hope. At the Twycross Zoo Conference Centre, Burton Rd, Atherstone, Warwickshire, CV9 3PX – 10am to 5pm at the Conference Centre: Conference and opportunity for socialising and family fun at the Zoo itself. – Evening Meal and a chance for […]
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