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 deal with all aspects of Fanconi Anaemia.
Please email Beth at firstname.lastname@example.org or call her on 07391 782115 and she will get back to you.
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.
Fanconi Anemia: Guidelines for Diagnosis and Management
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 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.
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 secret Facebook Group for more private discussions amongst patients and families worldwide. To see the secret group you first need to request permission to join from Jordan Deines, their Family Services Director.
Fanconi Hope Newsletters: These are published on an occasional basis. Please sign up on our Home Page
Fanconi Anemia Research Fund Newsletters: Twice a year, the FARF publishes the FA Family Newsletter, a 32-page publication featuring topical science articles, family stories, fundraising inspiration, and FARF news. Don’t forget to sign up here.
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.