TOFS Member Bryony is organising a meet-up in Brisbane, Australia. This is a great opportunity to meet up with other OA/TOF parents and families in Queensland. When:10am-2pm Sunday, 3rd November Where to meet-up:South Bank Brisbane This event is being organised by Bryony herself. If you are interested in attending, then please reach out to Bryony […]
Calling all adults born with OA/TOF. You’re invited for a virtual cuppa and chat with other adults born with OA/TOF. This informal meet-up is led by volunteers, who are also adults born with OA/TOF, and is a relaxed, safe space to share stories and experiences with others that understand what you are going through. So, come along, […]
Run for TOFS at the UK’s biggest Theme Park, Alton Towers, on Saturday 16th and Sunday 17th November 2024 for the 5k, 10k & Half Marathon event around the park. Entry fee £15 (+booking charge) - Juniors£20 (+booking charge) - AdultsThis fee goes towards covering your subsidised entry cost and the admin fees charged by […]
Click here to see the full Seminar schedule and to meet the speakers.Join us in Warrington to hear from some leading experts and specialists from a variety of healthcare professions, who work with OA/TOF patients. It is also a great chance to chat with other members; meet the TOFS volunteers and staff team and meet […]
Don’t miss your chance to meet up with other OA/TOF parents and families in London.Laura Bell, TOFS Local Contact (TLC) for Kent and Sussex, and Carrie Semark, TOFS volunteer have organised an informal get-together in London and you are invited.When : Sunday, 17th November, 2024Where: Ronald McDonald House Evelina 17th November 2024, 12-3pmThis event is […]
Don’t miss your chance to meet up with other OA/TOF parents and families in Liverpool and from across Merseyside..Alan & Carolyn, TOFS Local Contacts (TLC) for Liverpool, are organising an informal Christmas get-together in Liverpool and you are invited.When:Saturday, 30th November, 2024Where:Best Western Premier Suites Hotel & SpaRibblers Lane, Knowsley, Liverpool L34 9HAThis event is […]
Calling all adults born with OA/TOF.You’re invited for a virtual cuppa and chat with other adults born with OA/TOF.This informal meet-up is led by volunteers, who are also adults born with OA/TOF, and is a relaxed, safe space to share stories and experiences with others that understand what you are going through.So, come along, enjoy a relaxing […]
Calling all adults born with OA/TOF. You’re invited for a virtual cuppa and chat with other adults born with OA/TOF. This informal meet-up is led by volunteers, who are also adults born with OA/TOF, and is a relaxed, safe space to share stories and experiences with others that understand what you are going through. So, come along, […]
Calling all adults born with OA/TOF. You’re invited for a virtual cuppa and chat with other adults born with OA/TOF. This informal meet-up is led by volunteers, who are also adults born with OA/TOF, and is a relaxed, safe space to share stories and experiences with others that understand what you are going through. So, come along, […]
Don’t miss your chance to meet up with other OA/TOF parents and families in Chelmsford and from across Essex.Anna Hallett, TOFS Local Contact (TLC) for Essex, is organising an informal get-together and you are invited.When:Sunday, 26th January, 2025Where:Mace Playce - Soft playUnit 3, Cuton Hall Lane CM2 6PB ChelmsfordThis event is being organised by Anna […]
Are you an adult born with OA/TOF experiencing gastro related issues then please join us for our next live Q&A webinar with Professor Nick Maynard. Professor Maynard is a leading consultant upper GI surgeon based in Oxford, with over twenty-five years of experience in his field. As one of the leading upper GI surgeons in […]
Calling all adults born with OA/TOF. You’re invited for a virtual cuppa and chat with other adults born with OA/TOF. This informal meet-up is led by volunteers, who are also adults born with OA/TOF, and is a relaxed, safe space to share stories and experiences with others that understand what you are going through. So, come along, […]
Do you have a child born with OA/TOF starting nursery, preschool or school soon? Join our Talk with TLCs session to speak to other parents and share experiences. The session will be held via Zoom and hosted by two of our TOFS Local Contacts (TLCs), Naomi Webborn and Cara Macdonald – both are volunteers and parents […]
Join us for our 2025 Awareness Week and help us raise awareness of OA/TOF with health professionals and the wider public.Click here to find out more and get involved.
Raising awareness and generating change for the 300 million people worldwide living with a rare disease, their families and carers. Keep reading to see how you can get involved. How to get involved Light up for Rare At 7pm on the 28th Feb, show your colours and join the global chain of lights! Play this […]
Quick links:Book your ticketFull scheduleSpeaker biographiesJoin us in Bristol to hear from some leading experts and specialists from a variety of healthcare professions, who work with OA/TOF patients. It is also a great chance to chat with other members; meet the TOFS volunteers and staff team and meet other charities/associations representing other medical anomalies. All […]
ERNICA – the European Reference Network for rare Inherited and Congenital (digestive and gastrointestinal) Anomalies have an upcoming webinar which may be useful for TOFS members. Title: A traumatic Diagnosis - the (early) parent-child interaction in (rare) chronic paediatric diseases When: Wednesday 5 March at 3pm (UK) / 4pm (CET) Book: https://events.teams.microsoft.com/event/08ac7def-4022-4d2e-a5c7-7e08feadf9e4@526638ba-6af3-4b0f-a532-a1a511f4ac80 About the webinar: […]
Calling all adults born with OA/TOF.You’re invited for a virtual cuppa and chat with other adults born with OA/TOF.This informal meet-up is led by volunteers, who are also adults born with OA/TOF, and is a relaxed, safe space to share stories and experiences with others that understand what you are going through.So, come along, enjoy a relaxing […]
Do you have any questions or concerns around the medications you or your child may take? Join Consultant Pharmacist Gastroenterologist Anja St Clair Jones, and Lead Neonatal Pharmacist Christian Chadwick, for this live Q&A session. All adults and parents welcome! Meet the speakersChristian ChadwickChristian is the Lead Pharmacist for Neonatal Care at the Royal Sussex […]
Calling all adults born with OA/TOF.You’re invited for a virtual cuppa and chat with other adults born with OA/TOF.This informal meet-up is led by volunteers, who are also adults born with OA/TOF, and is a relaxed, safe space to share stories and experiences with others that understand what you are going through.So, come along, enjoy a relaxing […]
Are you planning on taking your child born with OA/TOF away on holiday? Whether going away in the UK or abroad, as parents, our TLCs Naomi and To’neill understand the worry of what to pack, managing medications/equipment, and what food will be available… So, join them in sharing their top tips when travelling! CLICK HERE […]
Members and Associates are invited to join us for the Annual General Meeting of T.O.F.S.The T.O.F.S. Annual General Meeting will take place on the 24th April, 2025 by Zoom at 7:00 pm. Invited to attend: Council of Management, TOFS office staff, all Members and Associates Click here to register AGENDA1. Welcome and confirmation of quorum 2. Introduction3. […]
Run the London Marathon for TOFS! Latest news & updates TOFS London Marathon team We have now closed our application process for the 2025 London Marathon due to unprecedented interest, but please check out our other marathons and events. Entry fee: £50 This fee goes towards the admin fees charged by the race organisers but […]
