Please note: TOFS cannot vouch for any of the external websites listed here. Please see our general disclaimer for more information.
TOFS general support
A private Facebook group moderated by TOFS.
Adults & Teens born with Tracheo-Oesophageal Fistula / Oesophageal Atresia
Private Facebook group run and managed by adults born with OA/TOF. Administered TOFS.
Australia: OARA
Support group based in Australia.
Belgium: Association Belge des Familles Touches par lAtr
Support group based in Belgium.
Brazil: GAAE (Grupo de Apoio Atresia de Esôfago)
Support group based in Brazil.
France: AFAO (Association Française de l’Atrésie de l’Œsophage)
Support group based in France.
Germany: KEKS
Support group based in Germany.
Holland: VOKS
Support group based in Holland.
Italy: FATE
Support group based in Italy.
South Africa: OATSA
Support group based in South Africa.
Spain: ATE
Support group based in Spain.
Sweden: Esofagusatresi föreningen
Support group based in Sweden.
Switzerland: OA
Support group based in Switzerland.
Romania: Atrezie de esofag
Personal site which shares OA/TOF experiences in Romanian.
USA: EA/TEF Family Support Connection
United States based support group
The impact of OA/TOF on families and TOF Adults can be significant and it’s important that you take care of your mental health. Thankfully there are lots of places you can turn to for mental health support.
Mind
Advice and support to empower anyone experiencing a mental health problem.
Young Minds
Children and young people’s mental health charity.
NHS Mental Health Support
How to access mental health services via the NHS.
IAPT – NHS
Improving Access to Psychological Therapies, access to talking therapies and help with common mental health services provided by the NHS.
www.nhs.uk/service-search/find-a-psychological-therapies-service
Samaritans
Emotional support to anyone in emotional distress or who is struggling to cope.
CarersUK
Making life better for carers.
Support Line
Confidential telephone support in the UK for men, women, children and young adults.
Childline
A counselling service in the UK for children and young people up to their 19th birthday, provided by the NSPCC.
British Association for Counselling and Psychotherapy
Find the right counsellor or therapist for you
Anxiety UK
Advice and support for those suffering from anxiety and feelings of panic.
Kooth
Download the app for iphone and android. Free online counselling and emotional wellbeing platform for children and young people, accessible through mobile, tablet and desktop.
Headspace
Download the app for iPhone and android. Small daily meditations delivered in bitesize chuncks, to combat anxiety and stress.
Rare Minds Wellbeing Hub
Resources and information to help you live as well as possible with your rare condition
Disability Living Allowance
Apply for the UK disability living allowance here.
Patient UK
Information on health, benefits and grants and links to other useful sites.
Department for Work and Pensions
Details of benefits and services available from the department for Work and Pensions.
Entitledto – what can you claim?
Easy to use website with a free web-based calculator to help you work out your entitlements to benefits and tax credits.
Family Fund
Grants available for families raising a disabled or seriously ill child.
Hospital Travel Cost
NHS scheme for help with travel costs for those who qualify.
www.nhs.uk/nhs-services/help-with-health-costs/healthcare-travel-costs-scheme-htcs/
Links to organisations which maybe useful to those affected by OA/TOF.
St John Ambulance
First aid advice.
Guts UK
Charity providing expert patient information and support for digestive conditions and symptoms affecting the gut, liver and pancreas.
Contact – for families with disabled children
UK charity which signposts parents to relevant support groups. CaF also provides resources on a range of issues (including benefits and rights) and offers the support of a Welfare Rights Officer. Directory for specific conditions, rare disorders and UK Family Support Groups.
Skiggle
An online SOS solution system for care-based essentials where members can request immediate assistance in unforeseen circumstances. For example – you are on holiday and find you have forgotten a vital piece of equipment. This site may help to locate somebody nearby who can help.
Action for Sick Children
Information and resources to help prepare children for hospital visits.
Special Needs Kids
Information directory and shopping site to help parents and carers of children with special needs. Information on products, sources of support and much more.
Newlife
Charity for sick and disabled babies, children and families. Provides grants, information and advice through a nurse helpline and grants.
European Association for Children in Hospital
Charter listing the rights of children before, during or after a stay in hospital. Action for Sick Children (see link above) are members of this Association.
Bliss
For babies born premature or sick
National Childbirth Trust
Support and advice for parents during pregnancy, birth and the early days of parenthood.
The Henry Spink Foundation
The Henry Spink Foundation is an independent charity created to help families of children with severe disabilities of all kinds.
Child feeding guide
Strategies and tools for tackling fussy eating
A Little Deep Sleep – a guide to anaesthetics
A family guide to anaesthetics, which aims to ease anxieties children may have about anaesthetics, giving them a clear idea about what might happen during their hospital visit.
Pectus Support UK
Private Facebook group offering support for those with pectus and chest deformities.
Asthma & Lung UK
UK based charity who campaign on behalf of people with lung conditions.
Adult Preemie Advocacy Network
Created by a group of adults who were born prematurely to share their experiences and discuss all issues relating to the long-term impact of premature birth
PINNT
A support & advocacy group for people on Home Artificial Nutrition (HAN).
BAPEN (for Healthcare professionals)
The British Association for Parenteral and Enteral Nutrition brings together leading multi-disciplinary professional and patient groups and networks from across the UK to help promote the best possible outcomes in nutritional care.
VACTERL Association Support Group
UK based support group dedicated to helping families affected by VACTERL/VATER Association.
VACTERL Visionaries
Provides peer support for others living with VACTERL Association.
ONE in 5000 Foundation
Based in Australia, the ONE in 5000 Foundation world wide resource for the Imperforate Anus / Anorectal Malformation community.
Max’s Trust
Providing support and information to the UK anorectal malformation community.
IA Friends UK
A private Facebook support group for adults and parents of children in the UK affected by the congenital condition Anorectal Malformation / Imperforate Anus.
Anorectal malformations & Hirschsprung’s disease sexual support website
Designed to support patients with Hirschsprung’s disease and anorectal malformations, their parents and healthcare professionals.
Kidney Care UK
The UK’s leading kidney patient support charity.
British Dietetic Association (BDA)
The BDA is the only body in the UK representing the whole of the dietetic workforce. This site includes information on food and health.
Infant & Toddler Forum
Toddler and Infant Nutrition Advice.
HSC Public Health Agency
Weaning made easy: moving from milk to family meals. Downloadable booklet.
Public Health Dietitians on YouTube
Webinars and videos on introducing solids and fussy eaters.
Gagging vs Choking
The differences you need to know when weaning your baby.
Help Stop Choking
Choking Awareness Booklet from HSC Public Health Agency.
https://belfasttrust.hscni.net/service/speech-and-language-therapy/help-stop-choking/
Gagging vs Choking
The differences you need to know when weaning your baby.
Help Stop Choking
Choking Awareness Booklet from HSC Public Health Agency.
https://belfasttrust.hscni.net/service/speech-and-language-therapy/help-stop-choking/
Dysphagia: IDDSI
A global initiative to improve the lives of people living with dysphagia.
