TOFS is a UK-based charity dedicated to providing emotional support to families of children and adults born with rare congenital conditions (Tracheo-Oesophageal Fistula and/or Oesophageal Atresia - TOF/OA) that renders them unable to swallow. From the first moment that parents find out that their child has TOF/OA, TOFS is there to support them through the everyday challenges they face with information, mutual support, medical liaison and research.
TOFS' mission is to improve the lives of those born unable to swallow. Tracheo-Oesophageal Fistula (TOF) and Oesophageal Atresia (OA) are rare congenital conditions of the oesophagus (food pipe) and/or trachea (airway) that affect one in every 3,500 babies. Babies born with TOF/OA need to have intensive neo-natal care prior to corrective surgery, normally within days of birth.
Some children may also have to undergo additional surgical interventions later on in their lives. The effects of surgery and associated health problems can add a great deal to the usual challenges of parenthood. However, with the benefits of modern medical intervention and the active support of groups like TOFS, the outlook for children with TOF/OA is very positive.
TOFS aims to:
- To provide outstanding support and information to all parents, families and carers of babies born with TOF/OA.
- To raise awareness of TOF/OA so there is more understanding for patients and families affected by these condition(s).
- To facilitate mutual support and in doing so, reduce the isolating nature of rare, unseen conditions such as TOF/OA.
- To campaign for adequate transition from paediatric to adult care for all TOF/OA patients.
- With a growing cohort of adult TOFs, TOFS aims to raise awareness that TOF/OA is not a paediatric condition but may have long-lasting effects into adulthood.
Established: February 1987
Registered Charity Number: 327735
Board members: 7
Part time staff: 3
Phone number: 01159613092
Address: St George's Centre, 91 Victoria Road, Netherfield, Nottingham. NG4 2NNView charity accounts on the Charity Commission website