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Our UK FA Liaison and Research Coordinator

Fanconi Hope has taken an important step forward in support of improved care for the Fanconi Anaemia (FA) community in the UK by funding a long term study through Manchester University called: “Observational study for long term health implications of individuals affected by Fanconi Anaemia”. One of the first activities in this study, which started in May […]

Keeping Track of Blood Counts

Keeping track of blood counts following diagnosis and prior to bone marrow transplantation is important. In addition, if you decide to use Danazol to boost blood counts in the pre-transplant phase, Prof Helmut Hanenberg in the US would very much like you to be part of his long running study into the effects of this […]

Gene Therapy

We are now moving into an exciting new phase in the development of gene therapy as a radically-improved treatment option for FA as we now transition from research into the clinical trials phase after many many years of unrequited promises. The promise that gene therapy holds is to treat bone marrow failure, prevent leukaemia, reduce incidence of […]

Nutrition and Dietary Advice

  Advice on nutritional problems for patients with Fanconi Anaemia: Fanconi Hope Information Sheet: link Presentation given by Carol Ceresa, San Francisco VA Medical Center, US at a meeting for Adults with FA, on October 26-29, 2012 in Texas. link

Facilities, Days Out, Holidays etc

Wish Granting Organisations Make a Wish Foundation UK: Make-A-Wish grants magical wishes to children and young people fighting life-threatening illnesses. Make-A-Wish was founded in the UK in June 1986 and, since then, we have granted over 5,300 wishes. At any given time, over 20,000 children in the UK are living with life-threatening conditions and our […]

Benefits, Entitlements and Grants

Our role in Fanconi Hope is to help guide people towards organisations that specialise in the right type of support. Organisations that can help with Benefit Claims It is certainly the case that the benefits system has been tightened up as of late 2012, and we have evidence from one of the hospitals involved in disability living allowance […]

Oral Hygene and Dental Care

Visiting your Dentist or Ear, Nose and Throat Specialist? Your dentist and ENT specialist play a vital part in the early detection of Head and Neck Squamous Cell Carcinoma (HNSCC). HNSCC are a significant threat for people with FA, regardless of bone marrow transplantation status. Not only is the incidence of HNSCC considerably higher than in the […]

Head and Neck Cancers

Prevention, Screening and Treatment Head and neck cancers in Fanconi Anaemia: Fanconi Hope Information Sheet. link Head and Neck Cancer in Fanconi Anemia: Risks, Screenings, Prevention and Treatment Options: Presentation given by Bhuvanesh Singh, MD, PhD, Memorial Sloan-Kettering Cancer Center, New York, NY at Camp Sunshine 2012. download. Also an article in FARF Newsletter #52 (Nov 12), by […]

International Fanconi Anaemia 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 […]

International FA Gene Therapy Working Group – First Meeting: 2010

International Fanconi Anaemia Gene Therapy Working Group –  “a real platform for the accelerated development of collaborative clinical studies.” Reported in Nature: Molecular Therapy “Stem Cell Gene Therapy for Fanconi Anemia: Report from the 1st International Fanconi Anemia Gene Therapy Working Group Meeting” : Jakub Tolar. Download the full paper here . Report from First […]