Benefits, Entitlements and Grants

Our role in Fanconi Hope is to help guide people towards organisations that specialise in the right type of support.

  • Genetic Disorders UK . An excellent source of advice about benefits, entitlements. They also have a new partnership with the Disability Law Service, a charity which assists disabled people and their families with legal advice. If you wish to contact the charity, call 020 7791 9800, email: or go to their website:
  • Contact (formerly Contact a Family) have
    • a Genetics Counsellor as well as local area staff who may be able to assist/advise you.
    • A section on their website on Benefits and financial help. They can also provide advice on  Personal Independence Payment (PIP) applications.
    • A free Helpline on 0808 808 3555.
  • Carers UK: Help and advice on Disability Living and Carer’s Allowances.  Call Adviceline on 0808 808 7777.
  • Turn to Us:  A very good website for you to visit to see what you can claim at a glance. There is no need to register and you can get impartial advice on what you may be entitled to. Call Helpline on 0808 802 2000.
  • Citizens Advice Bureau.
  • Money Advice Service and their Guide to charitable grants.
  • Department of Work and Pensions.
  • If your child is hard of hearing, the Deaf Society has certainly helped other parents with their DLA submissions.

Organisations that can provide Grants, equipment or home makeovers

  • Turn to Us:  Search for Grants
  • Family Fund are the UK’s largest provider of grants to low-income families raising disabled and seriously ill children and young people. They can help with essential items such as washing machines, fridges and clothing but can also consider grants for sensory toys, computers and much needed family breaks together. Phone: 08449 744 099. Eligibility criteria: Those receiving one of the following – Child Tax Credit, Working Tax Credit, Income-based Job-Seeker’s Allowance, Income Support, Incapacity Benefit, Employment Support Allowance, Housing Benefit or Pension Credit.
  • Well Child helps sick children and their families throughout the UK to manage the consequences of serious illness and complex health conditions through our programme of care, support and research.  WellChild’s Helping Hands is a unique scheme offering practical support to sick children and their families through one off home improvement projects, such as a garden or bedroom makeover. When you’re caring for a sick child, re-decorating a room or adapting a garden can seem like climbing a mountain – there just aren’t enough hours in the day. With the generous help of volunteer teams from company’s situated local to our families, we are able to make a dramatic and lasting impact to the daily lives of sick children around the UK.
  • Joe Glover Trust (For children with cancer). Because we are a small charity we can react quickly to provide direct help to families when they most need it.  Whether it is helping with transport costs to and from hospital appointments, assisting with childcare costs, providing a much needed holiday during a child’s last months, or buying a concert ticket so a child can see their favourite band, we want to make a positive contribution to their lives and, if we can, introduce some fun and laughter along the way.
  • The Rainbow Trust.  We support these families who have a child with a life threatening or terminal illness and are in the greatest need. Our Family Support Workers provide a life line to these families and children. We support the whole family including parents, carers, the unwell child, brothers, sisters and grandparents. They bring support and help to families who so desperately need it at home, in hospital and in the community. Any family can receive support from the moment of their child or young person’s diagnosis.
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