TOFS is the charity dedicated to offering lifelong support to those born with Oesophageal Atresia (OA) and Tracheo-Oesophageal Fistula (TOF).
We do this by supporting families, adults, and medical professionals.
Oesophageal Atresia (OA) and Tracheo-Oesophageal Fistula (TOF) are rare congenital conditions that affects one in every 3,500 people and means they are born unable to swallow.
OA means the baby was born with a pouch at the top of their oesophagus which prevents milk from reaching their stomach. TOF means the bottom of the baby’s oesophagus (food pipe) was joined to their trachea (windpipe).
The life-saving operation can repair, but does not cure.
While it is often seen as a condition that affects only children, many born with OA/TOF will go on to have serious complications and require support throughout their lives.
Aims:
TOFS aims are:
Provide trusted information and support to OA/TOF patients regardless of age; Spread awareness of OA/TOF conditions and their implications post-repair; Facilitate peer-to-peer support and empower patients and their families to seek best outcomes.
Services provided:
- We organise exclusive member only events e.g. conference, meetings and parties where OA/TOF families can meet.
- We provide emotional support, friendship and practical advice.
- We keep our members informed about OA/TOF developments through regular emails and 3x yearly copies of CHEW, our informative newsletter, delivered for free by post or email.
- We offer the chance to be part of a friendly, supportive and international community which collaborates with other OA/TOF/rare disease organisations and professional medical bodies in the UK and abroad.
- We have an active closed Facebook group at https://www.facebook.com/groups/TOFSMEMBERS/ where members help and support each other.
- TOFS has a free digital library for health professionals.
Local groups:
TOFS offers support via our network of local volunteers (our TOFS’ TLCs).
Membership:
Open to all adults born with OA/TOF, parents of children born OA/TOF and related conditions, and healthcare professionals who have a professional interest in these conditions.
Address
St. George’s Centre
91 Victoria Road
Netherfield
Nottingham
Nottinghamshire
NG4 2NN
United Kingdom
Phone: 0115 961 3092
Website: https://tofs.org.uk/
Email: peter@tofs.org.uk
Contact form: https://tofs.org.uk/contact-tofs/
