For Patients and Families

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 6.jpg

 

You can read more about Beth Lee, her role and the Study itself 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 Available 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

Fanconi Hope is organising a Conference and Family Day on Oct 14th 2017 near Birmingham. This is open to all Uk and Irish families affected by FA. More details here.

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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Family News

Fanconi Hope FA Conference and Family Fun Day Invitation

If you or a family member is affected by Fanconi Anaemia (FA) in the UK or Ireland, you are cordially invited to attend our Fanconi Anaemia Conference and Family Fun Day to be held at Twycross Zoo Conference Centre near Tamworth, northeast of Birmingham, on Saturday 14th October 2017 from 10.30am to 5pm, followed by […]

June 23, 2017

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What you CAN do with Fanconi Anaemia.

Here’s an encouraging story about Amy Parry on her forthcoming trip to undertake voluntary work in Cambodia – 8 years post-bone marrow transplant. Amy was diagnosed with Fanconi Anaemia in April 2008, and by February 2009 she was in hospital getting ready for a bone marrow transplant. After her chemotherapy she had the transplant, and everything seemed fine. Unfortunately […]

June 3, 2017

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£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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