Families
Please see posts at foot of page for the latest Family News
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 can be contacted by e-mail, by writing to Bob Dalgleish at Fanconi Hope, PO Box 905, Southsea, Hants, UK PO19JG or by calling 0845 271 2811.
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:
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Family Contact List: If you wish to contact other families in the UK or are willing to be contacted by them, FARF maintain a worldwide directory of such families, including many in the UK. This directory is available by registering with FARF via their family support coordinator Teresa Kennedy. Please also let us know if you would like to contact others or would like them to be able to contact you.
Message Board: FARF also manages an E-mail Support Group which allows FA families to exchange questions and information with other FA families. Many families find the E-group to be a valuable and readily available source of information to help them deal with the diagnosis and effects of Fanconi Anaemia.
Fanconi Hope Facebook Page: Fanconi Hope has a Facebook page where you can interact with other FA families and Fanconi Hope Fans.
Fanconi Hope Newsletter
- Spring 2009 Edition is available to download here.
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
- This Registry, which we aim to set up is to help improve care and enable more research to be conducted in the UK. Read more about the plans for the Registry
Family News
FARF Family Directory Update – Deadline 23rd Dec 2011
Pauline Thaler at the US Fanconi Anemia Research Fund is working on updating their Family Directory for publication in early 2012. This is a worldwide family directory which allows people to to identify and contact other families in their area. Fanconi Hope does not currently maintain a separate UK Directory. If you would like to be [...]
December 21, 2011
Welcome to Fanconi Anaemia South Africa!
Wynand Van Der Merwe in South Africa has contacted Fanconi Hope to let us know that he has recently built a website called Fanconi Anaemia South Africa in memory of his wife Madeleine. The reason for the website is to raise awareness of the disease and hopefully register a non-profit organisation soon to provide financial aid [...]
December 20, 2011
Fanconi Hope wishes you all a Happy Christmas
A Very Happy Christmas from Thomas, Louise, Mary, Stefan, Alan, Bob and Jeannie at Fanconi Hope to FA Families everywhere. And a special thank you to those who have raised funds for the Charity during the year!
Live in Northern Ireland? Rare Disease UK needs your help
New survey investigates patients’ experiences of getting a diagnosis of a rare disease in Northern Ireland. Rare Disease UK has been in contact with Fanconi Hope to promote a survey on rare disease diagnosis in Northern Ireland:- Rare Disease UK has been actively involved with the Northern Ireland Rare Disease Partnership. The Partnership, with the support [...]
November 20, 2011
Preimplantation Genetic Diagnosis (PGD) Survey for FA Parents
The Fanconi Anemia Research Fund is assisting Heather Zierhut, MS, CGC from the University of Minnesota, USA in a research project that involves a survey for parents of children and adults with Fanconi Anaemia. Please note that the survey needs to be completed by October 31st. “Dear parents of children with FA, You are invited [...]
October 25, 2011
Real Progress towards Gene Therapy Trials through the International FA Gene Therapy Working Group
The 2nd Meeting of the International FA Gene Therapy Working Group was held at the FARF 23rd Annual Scientific Symposium in Barcelona on 20th October, 2011 with the meeting co-sponsored by Fanconi Hope, FARF, and the Spanish group, the Centre for Biomedical Network Research on Rare Diseases (CIBERER). The meeting was again ably chaired by Prof Jakub Tolar [...]
FARF Newsletter Oct 11 Just Published
Congratulations to FARF on the publication of the 50th edition of their Family Newsletter. Available to download from the FARF website here
October 23, 2011
Sasha and Charley discuss the Emmerdale Storyline on ITV’s This Morning
You can now view Sasha Gillespie and Charley Webb’s interview with Phillip Schofield and Holly Willoughby online. Thanks again Sasha for raising the profile of Fanconi Anaemia in the UK. And BBC Ulster was so impressed with Sasha’s performance on ITV that she is now being interviewed on BBC Radio’s Good Morning Ulster on Monday [...]
October 22, 2011
Fanconi Anaemia featuring on Emmerdale!
For 6 months now Fanconi Hope has been working closely with researchers at ITV to develop the storyline featuring Debbie Dingle’s daughter Sarah who, in an hour long episode on October 5th will finally be diagnosed with Fanconi Anaemia (FA). The storyline is based on the experiences of real families in the UK affected [...]
September 28, 2011
Help Wanted with Quality of Life Study
If you have a child between 4 and 10 with an illness/condition such as Fanconi Anaemia, Johanna Reed of University College London would like to invite you to participate in her Study on Children’s Quality of Life Measurement. It has been shown by lots of research that given the same set of circumstances a child will give [...]
May 13, 2011
