Useful Links
UK Websites
Organisations offering facilities, opportunities and other support
For all FA Families
- F.A.B. UK: FAB – Fanconi Anaemia Breakthrough (See Support for Parents page)
- Fanconi Anaemia Family Support: FA Family Support charity recently set up by the McDowell Family in Yorkshire
- Barretstown: Barretstown in Co Kildare is a specially designed camp for children with serious illnesses – primarily cancer and serious blood diseases – from Ireland, Britain and throughout Europe, and their families.We provide a unique programme of adventure, activities and fun – backed by the medical world – which helps children with serious illness regain their confidence and self-esteem and has become internationally recognised as having a profound and positive impact on their lives.
- 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 aim is to grant 21 wishes a week by the year 2010. Whether a wish is to be a princess or a policeman for a day, own the latest computer equipment, meet a favourite celebrity or just enjoy some special time away from home with their family, a wish come true brings so much to a child’s life and provides memories for the family that last a lifetime.
- Ronald McDonald House Charities: RMHC – Ronald McDonald House Charities supports families in the UK with children in hospital. RMHC provides free ‘home away from home’ accommodation in or near hospitals for the families of children requiring in-patient care in hospitals and hospices across the UK. RMHC’s main focus is establishing Ronald McDonald Houses (RMH) and Ronald McDonald Family Rooms (RMFR) at children’s hospitals and hospices throughout the UK. In addition to providing bedrooms and communal living areas, a Ronald McDonald Houses and family provides valuable support for the families and enable them to rest in private or enjoy the company of other families.
- Sick Children’s Trust
The Sick Children’s Trust believes that no child should be separated from their family while in hospital receiving treatment for serious illness – help us to allow the most basic of medicines to work; family, love and support. Our mission is to provide high quality ‘Home from Home’ accommodation for families whose children are receiving hospital treatment for serious illness.
The Sick Children’s Trust exists to support and promote the child’s recovery and further to support the fabric and well being of the family as a whole.
For FA Families living with Cancer
- CLIC Sargent: Supports children and families with FA when they become ill with cancer or leukaemia.
- UK McMillan Cancer Support :Support for Families living with Cancer:
- Cancer Backup: Resources for living with cancer
- Wessex Cancer Trust: Have two holiday homes in Weymouth & New Milton Holiday homes that they have available for patients and their family to escape and have a break.
- Mouth Cancer Foundation: The Mouth Cancer Foundation was established in June 2004 to be a professional support organisation solely dedicated to supporting people with mouth, throat and other head & neck cancer. Provides counselling and support for patients and families. Individual counselling sessions for people with cancer and their loved ones; conducted in person, over the phone and via the Internet.
• providing a telephone helpline and education led by experts
• providing an online support group and interactive Web community
• providing assistance for those who need it most.
• providing assistance for those who need it most.
• assisting with obtaining financial assistance for things such as pain medication, homecare, childcare, and transportation to and from treatment; - Christian Lewis Trust Children’s Cancer Charity
This year, the Christian Lewis Trust commemorates 20 years of caring and supporting families affected by children’s cancer. Since 1989 this small Swansea based charity has raised over £6million, helped more than 4000 families and gained UK-wide recognition for its work and activities.
Blood and Bone Marrow Donation
- The National Blood Bank Please become a blood donor
- National Blood Bank Bone Marrow Donor Registry
- The Anthony Nolan Trust/Bone Donor Marrow Registry Please contact the Anthony Nolan Trust to be added to their Bone Marrow Donor Registry and consider organising local bone marrow donor registration clinics with the support of the Anthony Nolan Trust)
- The Irish Bone Marrow Transplant Patient & Family Support Group
- The Irish Blood Transfusion Service
- Irish Bone Marrow Trust Supporting the Republic of Ireland Bone Marrow Transplant Unit at St James’ Hospital, Dublin
Health Organisations
International Fanconi Groups
- Australia: Fanconi Anaemia Australia
- Austria: Fanconi Anaemia Support Group
- Belgium: Steven’s Association Moonrise is a charity dedicated to raising money for the purpose of research into and raising awareness about Fanconi anaemia (FA) and its associated problems.
- Canada: The Canadian Fanconi Anemia Research Fund
- France: Association Française Maladie de Fanconi (Translate this page)
- Germany: German Fanconi Anemia Support Group (Principal group) (Translate this page)
- Germany : 2nd German Fanconi Anaemia Support Group (Translate this page)
- Ireland: Fanconi Ireland Facebook Page
- Italy: Italian Association for Fanconi Anaemia Research (Translatethis page)
- India: REFAIN; Registry for Fanconi Anaemia in India
- Netherlands: Dutch Childhood Cancer Parent Organisation
- Spain: Spanish Fanconi Anaemia Association (Translate this page)
- USA: Fanconi Anemia Research Fund Website
- USA: Fanconi Anemia Research Fund Facebook Page
- USA: Fanconi Anemia Research Fund Group Bulletin Board
Glossaries
Clinical and Research links can be found here








