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Update on our Adult TOF Working Group

Today is the Big Help Out, a festival of volunteering to commemorate the Coronation. So, it is the ideal time to take a look at the accomplishments of one of our volunteer groups, the Adult TOF Working Group and to thank all our amazing volunteers for all their help.

Here’s just a little of what they have contributed to, or achieved, since the group formed in September 2021.

Producing helpful guides

Our Adult TOF Working group produced both our “Adult OA/TOF Management Handbook” and  our “Improving Health Outcomes” booklet.

These were created to help fill the knowledge gap of a rare and complex condition and to help GPs understand, treat and signpost treatment to the appropriate specialist when needed.

Pocket-sized health passport

Handy sized (A7) 4 page booklet is perfect to quickly share information about your own or your child’s OA/TOF.

OA TOF Health Passport

Producing and contributing to videos and Chew articles

Members of our Adult TOF Working Group have been instrumental in creating videos sharing their experiences of being an adult born with OA/TOF. They are also regular contributors to our Chew magazine.

Chew magazine from TOFS

Representing TOFS at medical conferences

Devising gastric/respiratory appropriate literature, banners, posters and attendance at events for

    • British Society of Gastroenterologists (BSG)
    • British Society of Paediatric Gastroenterologists Hepatologists and Nutritionists
    • (BSPGHAN)
    • Association of Upper Gastrointestinal Surgery of Great Britain and Ireland (AUGIS)
    • British Thoracic Society (BTS)  
OFS represented at o British Society of Gastroenterologists event in Liverpool

And lots more in the pipeline. Just watch this space. A huge thank you to everyone involved

Meet the volunteers

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