Families and Affected Individuals

Please see posts at foot of page for the latest news for families and affected individuals.

Beth Lee - Fanconi Hope FA Coordinator

Ask Beth – our Fanconi Hope FA Coordinator

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.

Beth Lee 6.jpg

 

You can read more about Beth and her role here

 

 

 

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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:

  • 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.
  • Fanconi Hope have published, in conjunction with the UK & Ireland FA Clinical Network, the Fanconi Anaemia Standards of Care.  You can also order a hard copy free by contacting us. If your GP and/or clinician do not have a copy, please feel free to ask for several copies.

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.

Social Networking

Meeting Up

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

Information on a range of topics ranging from medical to financial are gradually being created and can be found here. If you have a topic you would like covered, please contact us

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.

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Family News

£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

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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 […]

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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

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