28th February – 6th March
Help us to advance knowledge of OA/TOF amongst health professionals.
This year’s TOFS Awareness Week runs from 28th February to 6th March. Our aim is to advance the knowledge of OA/TOF amongst health professionals, but we can’t do it without your help!
Please share our resources for medical professionals. We’d like every health professional to be aware of OA/TOF: GPs, respiratory doctors, gastroenterologists, speech and language therapists, dietitians, consultants, paediatricians, obstetricians, pharmacists, health visitors…just about every health professional that you feel would benefit from knowing about the consequences of being born with OA/TOF.
With your help, it’s so easy for them to get a FREE digital copy of our books, The TOF Book and The Soft Food Book. Please download and print this letter and give it to them, or ask them to complete the form here and we’ll send them a digital copy of the books, for them to download and have for evermore.
Our latest guide, “Improving health outcomes for adults born with OA/TOF and VACTERL”, is written by medical professionals for medical professionals.
This guide covers ome of the lifelong complications that being born with OA/TOF can bring.
Copies are available via the shop or for immediate download.
TOFS are calling for consistent lifelong multi-disciplinary care for people born with OA regardless of their age, or where they live in the UK. Download our suggested letter to send to your MP to highlight our cause.
Really importantly, our 2022 Awareness week launches on Monday 28 February, which is the international Rare Disease Day.
OA/TOF patients form part of the 30 million people in Europe who have or were born with a rare disease, and, behind the scenes at TOFS, lots goes on to raise our profile amongst the Rare Disease community.
In fact, we are incredibly proud of trustee Graham Slater, who has recently been awarded the prestigious EURORDIS Black Pearl Volunteer Award 2022 in recognition of his work with TOFS, EAT and ERNICA.
TOFS has considerable international reach with members in 65 countries. EURORDIS represents a ‘family’ of over 900 patient organisations of which TOFS (via EAT and the UK rare disease umbrella organisation Rare Disease UK/Genetic Alliance) is a part.
Graham has voluntarily spent much of his time in the past several years engaging with a considerable number of healthcare professionals, many of whom are outside the UK, in pursuit (ultimately) of improved treatments for those born with OA/TOF. He has been greatly engaged with ERNICA and INoEA, and was founder president of EAT, which is the international federation of OA/TOF support groups.
The work of EURORDIS is perhaps under-reported. Its efforts are focused on advocacy and collaboration, and the associated benefits are only realised over the long-term, but we hope this work will ultimately benefit those born with OA/TOF.
Please help us highlight the impact of rare diseases by sharing the following messages on your social media on the 28th Feb.
Did you know over 300 million people worldwide suffer from rare diseases? OA/TOF is a condition that affects 1 in every 3,500 babies born. Please help us raise awareness of #oa #tof and share this post. https://www.tofs.org.uk #tofs #oatof #RareDiseaseDay
Over 5% of the world's population are affected by rare diseases? OA/TOF is a condition that affects 1 in every 3,500 babies born. Please help us raise awareness of #oa #tof and share this post. https://www.tofs.org.uk #tofs #oatof #RareDiseaseDay
Let people know what being born with OA/TOF has meant to you and your loved ones. You can share your story on social media or contact your local newspaper.
Please don’t forget to tag us in to anything you share on social and mention TOFS in any news story.
We’ve produced a short press briefing about OA/TOF that you can use when speaking to journalists.
Order your OA/TOF wristband, car window sticker or bib to help raise awareness of the condition.
Unfortunately, Facebook no longer offer the ability for us to create a dedicated frame for members to use. However, we are asking members to show their support by changing their profile photo to one of ours for the week.
Creating a fundraiser on Facebook is a quick and simple way to help raise the profile of the condition as well as vital funds. Want to your own thing instead?
Check out our fundraising pages for loads of tips and ideas.
Invite you friends and family round and hold your very own “Tea for TOFS” tea party!
Help us raise awareness of TOFS by changing your social media profile photo for a week. Choose one of of our 4 designs below.
Please share our messages on your social media. We’ve put together some images and suggested text to make things easier.
Please share our messages on your social media. We’ve put together some images and suggested text to make things easier.
OA/TOF is a lifelong condition that affects 1 in every 3500 people. Many born with it will have lifelong difficulties with swallowing, digesting food, gastro-oesophageal reflux, respiratory problems and more. https://tofs.org.uk #tofs #tof #oa #oatof #RareDiseaseDay #pleaseRT
