About TOF/OA

IMPORTANT INFORMATION FOR NEW PARENTS

No doubt learning that your baby has been born with his or her oesophagus not properly developed will have caused you a huge amount of worry and concern. What will it mean for your baby’s future and how will you cope?  Please be assured that we are here to help you. Our TOFS charity is run by people who are parents or grandparents of TOF children, or were themselves born with TOF. It was established to provide practical and emotional support to all who are affected by the TOF condition.

On this website you will find lots of information which will help you to understand the medical issues. Please don’t try to read everything all at once; it's much better to take it one step at a time.

 

IMPORTANT INFORMATION FOR ADULT TOFS

We provide support to Adult TOFs by providing literature, holding events and much more. For example, we held an Adult TOF Seminar in London in 2018. You can see videos from last year's Conference and Adult Seminar here. Please keep an eye on our Events page where you can find out about our workshops specifically for Adults at our Annual Conference in Warrington this October.

Please do join us as an Adult TOF and join our friendly, welcoming community.

You can see our list of UK medical professionals known to treat Adult TOFs here. 

You can join the TOFS-endorsed, closed Facebook Group specifically for Adults here. 

 

 

SOME BASIC INFORMATION ABOUT TOF/OA

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 have to undergo additional surgical interventions later on in their lives. Whilst many children born with TOF/OA will experience only a few problems, others may have difficulties with swallowing and digesting food, Gastro-Oesophageal Reflux (where the acidic stomach contents pass back into the lower oesophagus) and respiratory problems. The effects of surgery and associated health problems may add a great deal to the usual challenges of parenthood.

FREE MEMBERSHIP OF THE TOFS CHARITY

When you join the TOFS charity you open the door to all sorts of additional support and become part of the family of all those who are involved with TOF – parents and grandparents of children with TOF, adults with TOF, and many health care professionals.

How much does it cost? Nothing — membership is free, but we do ask those who can afford to do so to make an annual or monthly donation to held towards the cost of running the charity.

BENEFITS OF JOINING OUR CHARITY

 

1.       You'll receive this FREE membership pack in the post (UK) or via email (elsewhere), which includes: our latest newsletter CHEW, informative leaflets, postcards for your GP and Early Years Setting, emergency card, badges and useful little cards including one about the TOF cough.

 

Members Pack 

 

2.       You'll receive emotional support, friendship and practical advice from people who are in a similar situation to you in a friendly, supportive and international community.

3.       You can access and receive support, if you need it, from TOFS' Local Contacts (TLCs).

4.       You will be kept informed about TOF/OA news through regular emails and 3x yearly copies of our members-only CHEW, our informative newsletter, delivered to you for free by post or email.

5.       You will be the first to hear about our events.

6.       You will meet from other TOF/OA families and adults at conferences, meetings and parties

7.       You'll be eligible to vote at our Annual General Meetings and shape how TOFS is run in the future.

8.       You will benefit from the wealth of knowledge that our Trustees have about TOF/OA.

9.       You can help influence and inform medical professionals and benefit current and future TOF/OA families.

10.     You will be part of a structured community which collaborates with other TOF/rare disease organisations and professional medical bodies in the UK and abroad.

 

JOIN OUR FACEBOOK GROUP

The TOFS Charity administers a highly successful Facebook group where you can contact other parents in the same situation as yourself, share your concerns and benefit from their advice. When you ask to join the group you must answer some simple questions, which help ensure that only people with a genuine interest in TOF/OA can become members.

Our Facebook group is 'closed'. This means that your other Facebook friends will not be able to see what is is posted in the group, unless they are members themselves.

Join our Facebook group here

 

BUY OUR HIGHLY RATED TOF BOOK FROM AMAZON

The TOF Book

TOFS has published a comprehensive book 'THE TOF BOOK' which contains contributions from leading experts on all aspects of TOF/OA and other related issues, as well stories and advice from the parents of TOF children and Adult TOFs. It has many highly rated reviews on Amazon. 

Buy your TOF Book from Amazon here

 

 

© Tracheo-Oesophageal Fistula Support
TOFS is a Registered Charity in England and Wales (327735) and a Private Company Limited By Guarantee without Share Capital, registered in England and Wales (2202260).
Registered address: TOFS, St. George’s Centre, 91 Victoria Road, Netherfield, Nottingham NG4 2NN.
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