26th February – 4th March
This year’s TOFS Awareness Week runs from 26th February to the 4th March. Can you help raise awareness of OA/TOF with health professionals? Speak to your GP, Consultant or other healthcare professional and help them get the facts about the longer-term implications of OA/TOF.
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 ask them to complete the form here and we’ll send them a digital copy of the books, for them to download and keep.
Released only last year, our Adult OA/TOF Management digital handbook is a fantastic resource for any health professional.
Share the QR code with your doctor or ask them to join our join our digital library here.
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.
This brand new pocket-sized health passport is a new resource that we’ve produced to make it easier to share important information about how OA/TOF affects you if you’re an adult born with the condition, or your child. Perfect to just keep in your bag or wallet or to give out to carers or health professionals. It’s a reminder of the importance of getting the facts about your OA/TOF – even if you have to ask your parents or care-givers for those facts – or ask for your (or your child’s) notes so that you have a handy reference should you need it.
iPhone may also be able to create a Medical ID on their phone to alert emergency services in the event of an accident. Find out more here.
Available to order from the TOFS shop now.
We will be releasing a brand new video where adults who were born with OA/TOF share some of their experiences.
Please keep your eyes peeled on social media during Awareness Week and help us spread the word that this condition can have life-changing effects on many people.
We’ve produced a helpful guide full of hints and tips about travelling abroad with child born with OA/TOF and new pocket sized information card to help adults born with OA/TOF.
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!
There are loads of ways to fundraise for TOFS but here are just a few suggestions to get you started. See our fundraising section for more.
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
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.
Help us raise awareness of TOFS by changing your social media profile photo for a week. Choose one of of our designs below.
As part of TOFS Awareness Week we will be supporting international Rare Disease Day.
Please help us highlight the impact of rare diseases by sharing the following messages on your social media on the 28th Feb.
Copy and paste our suggested message (or create your own).
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
Also, this Rare Disease Day we are once again hoping to create a global chain of lights to show the solidarity of the worldwide rare community. We are keen on individuals lighting up their windows at 19:00 on Rare Disease Day.