Support for Patients and Families living with Fanconi Anaemia

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 on 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@fanconihope.org

Read more about Beth Lee, her role and the Study itself

Working in Partnership

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 the ‘Support Available‘ page for more information.

Key Documents

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.

DocumentDownload the Guidelines for Diagnosis and Management.

Fanconi Anaemia Standards of Care

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.

DocumentDownload the Fanconi Anaemia Standards of Care.

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

Fanconi Hope held a Conference and Family Day on Oct 14th 2017 near Birmingham. Our intention is to hold these 2 yearly, with smaller events in the interim.

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 eligible.  Attendance is free and help with travel costs may be possible for first time attendees.

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.

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