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TOFS work with many national and international organisations to support our vision to ensure that anyone born with OA/TOF to be able to live life unlimited. 

Through our partnerships, we aim to work towards a world in which those born with OA/TOF live long and healthy lives, unconstrained by the impact of being born with these conditions.

Some of the organisations we partner with include.


TOFS is a founding member of EAT, an international federation of family support groups which focus on sharing experiences, disseminating information and raising awareness of the OA condition. TOFS’ volunteer, Julia Faulkner is currently a board member.

The main goals of EAT are to help EA patients and health professionals share their knowledge and experience, promote awareness of the condition across the world and support worldwide research and collation of information concerning the treatment and care of people born with oesophageal atresia.


ERNICA is the European Reference Network for rare Inherited and Congenital (digestive and gastrointestinal) Anomalies.

TOFS Trustee Graham Slater and TOFS Medical Advisory Group member Dr. Vuokko Wallace are both actively involved in the organisation.

ERNICA is engaged in significant ongoing development of:

  • guidelines/consensus statements, including parent & patient information
  • quality indicators and a registry
  • an increasing focus on Transition and Adult Care, and Quality of Life (QoL)


eUROGEN is the European Reference Network for rare urogenital diseases (includes ARM)

TOFS Trustee, Kate Tyler, is the EAT representative in this network. This provides important representation for our VACTERL patients.

Genetic Alliance UK

Genetic Alliance UK is the largest alliance of organisations supporting people with genetic, rare and undiagnosed conditions in the UK. Our members and the people they support are at the heart of everything we do.

European Lung Foundation

European Lung Foundation

TOFS is a member of the European Lung Foundation (ELF) – a patient-led organisation that works internationally to bring patients and the public together with healthcare professionals to improve lung health and advance diagnosis, treatment and care.

Dr Caroline Love, author of the Adult OA/TOF Management Handbook, and an adult born with OA/TOF, is also a member of the ELF Patient Advisory Committee.

Additionally, TOFS continues to maintain and build relationships with relevant UK medical societies other patient organisations including in the UK and oversea:

British Association of Paediatric Surgeons

British Association of Paediatric Surgeons (BAPS) endeavours to raise standards in paediatric surgery through education and research.

AUGIS (Association of Upper Gastrointestinal Surgery of Great Britain and Ireland)

AUGIS (Association of Upper Gastrointestinal Surgery of Great Britain and Ireland) promotes the establishment of high quality training programmes throughout the UK as a fundamental component of its activities.

British Society of Paediatric Gastroenterology, Hepatology and Nutrition

British Society of Paediatric Gastroenterology, Hepatology and Nutrition (known as BSPGHAN), the national, professional and academic society which represents specialty colleagues working for infants, children and young people with digestive and liver disorders.

British Society of Gastroenterology

The British Society of Gastroenterology is focused on the promotion of gastroenterology and hepatology.