Support Available

Support services have been divided into 3 categories.

  • Counselling and Advice (this page)
  • Financial Support (Benefits, Entitlements and Grants): here
  • Facilities, Days out, Holidays etc available free of charge: here

Counselling and advice

There are many options available for free counselling and advice in the UK, including the following:

  • Your GP
  • The Fanconi Anemia Research Fund’s (FARF) family support programme services, available to families internationally. You are encouraged to register with them. FARF’s mission is to support families worldwide, not just in the USA and we work closely together with them in an informal partnership.
  • Contact-a-Family. A child with FA may required extra support associated with their condition.  Parents may be entitled to some additional financial help or your child may need support at school.  Contact a Family supports families who have children with any health condition or additional need.  They have a freephone helpline staffed by advisers (including a genetics counsellor) who can help with a wide range of topics including grants/funding.  They also produce a wide range of publications that you may find useful, for example, for siblings.  Visit their website for more information about their services or call their freephone helpline on 0808 808 3555 available Mon-Fri 10am-4pm and Mon evening 5.30-7.30pm.
  • Sibs for a sibling with a disabled or chronically ill brother or sister.
  • Parents of Disabled Children: Bulletin Board for seeking answers from other parents.
  • CLIC Sargent.  Although primarily a cancer charity they will support children with FA in certain circumstances. For example, Aplastic Anaemia is seen as a cancer pre-cursor and therefore at this stage they may provide support. They have Social Work Teams in most major hospitals and it is highly recommended that you contact them as they can provide help and support in a number of ways.
  • Bereavement Support and Counselling:
    • Winston’s Wish is the leading childhood bereavement charity and the largest provider of services to bereaved children, young people and their families in the UK.
    • Child Bereavement UK is the UK’s leading national organisation supporting families and providing training to professionals across the entire spectrum of child bereavement. They have a searchable database containing contact details of bereavement-related help and support services in the United Kingdom.

For FA patients with cancer

  • Leukaemia Care: for patients with blood and lymphatic cancers
  • UK McMillan Cancer Support: Support for Families living with Cancer:
  • 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.
    • assisting with obtaining financial assistance for things such as pain medication, homecare, childcare, and transportation to and from treatment.
  • Tenovus Cancer Support Helpline: for patients with cancers. Call Helpline on 0808 808 1010.

For Other Information

  • Information on financial support (Benefits, Entitlements and Grants) can be found here
  • Information on facilities, free days out, holidays etc can be found here
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