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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 […]

http://www.fanconihope.org/families-and-affected-individuals/medical-advice-from-qualified-medical-sources/oral-hygene-and-dental-care/

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 […]

http://www.fanconihope.org/families-and-affected-individuals/medical-advice-from-qualified-medical-sources/head-and-neck-cancers/

International FA 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 […]

http://www.fanconihope.org/clinical-network/international-fa-gene-therapy-working-group/

Danazol Study by Dr Helmut Hanenberg

A study by Dr Helmut Hanenberg shows that danazol improves blood counts in FA Patients. This work is ongoing and anyone using danazol is encouraged to provide regular updates on their blood counts, height and weight. (Text courtesy of FARF): Stem cell transplant is not always an option for Fanconi Anaemia patients, and others choose to delay […]

http://www.fanconihope.org/danazol-study-by-dr-helmut-hanenberg/

International FA Gene Therapy Working Group – 2nd Meeting: 2011

The Working Group Members 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 […]

http://www.fanconihope.org/clinical-network/international-fa-gene-therapy-working-group/international-fa-gene-therapy-working-group/

Research and Trials You Can Take Part In

The pages under this section detail research studies or trials that you may be able to contribute to. They are all open to UK patients. Call for Participants in Study of Early Detection of Oral Cancer in FA Patients. link Danazol Study by Dr Helmut Hanenberg: A study by Dr Helmut Hanenberg shows that danazol improves blood […]

http://www.fanconihope.org/families-and-affected-individuals/research-for-families/increase-in-oral-cancers-linked-to-hpv/

Studies into the Role of Alcohol in DNA Damage

(Published with kind permission from Bev Mayhew, Exec Director of FARF) Dear FA families, An article by KJ Patel, MD, PhD, from the University of Cambridge in the United Kingdom, was published last month in the scientific journal, Nature. Dr. Patel, who received support from FARF for this work, studied the role of a toxic […]

http://www.fanconihope.org/families-and-affected-individuals/research-for-families/studies-into-the-role-of-alcohol-in-dna-damage/

Guidance for Professionals

Guidance for ENT Specialists Head and neck squamous cell carcinoma (HNSCC) is 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 general population (500-700 times higher), patients with FA present with these types of cancers at a younger age […]

http://www.fanconihope.org/clinical-network/guidance-for-professionals/

About the Charity and Progress to Date

The Fanconi Hope Charitable Trust Three parents of affected children, Thomas Carroll, Richard Kawalek and Bob Dalgleish started the Fanconi Hope Charity in 2008, to fund research into this disease, to help engender consistent best practice treatment across the UK by initiating and running an NHS FA Clinical Network and to provide much-needed support to […]

http://www.fanconihope.org/giving-and-fundraising/about-the-charity-and-progress-to-date/

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 http://www.nature.com/mt/journal/v19/n7/full/mt201178a.html Full paper Report from First Meeting: November 16th […]

http://www.fanconihope.org/clinical-network/international-fa-gene-therapy-working-group/working-group-1/
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