TOFS Awareness Week 2023

26th February – 4th March

TOFS Awareness Week 2023

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.

How you can 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. 

Share the book with your health professionals

The TOF Book and Soft Food Recipe Book

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.

Tell your doctor about our adult OA/TOF digital handbook

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.

Contact your MP to call for change to how OA/TOF is treated in the UK.

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. 

New for 2023

My Health Passport

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.

OA/TOF in our own words

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.

Travelling guide for OA/TOFs

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.

Other ways to help during Awareness Week

Help us to raise vital funds

Start a Facebook fundraiser

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.

Hold a tea party for TOFS!

Tea for TOFS

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. 

  • Sponsored run or walk
  • Bakers ready! Have a cake sale
  • Nominate TOFS as your company charity of the year
  • Bargain hunt! Hold a car boot or yard sale at home
  • Shhh – hold a sponsored silence
  • Ask a local business if they will display a TOFS collection box
  • Organise a family quiz with donation to TOFS
  • Nominate TOFS to benefit from your school’s own clothes day or shopping bag packing at a local supermarket
  • Play the TOFS weekly lottery
  • and lots, lots more

Share our social media posts

We’ve put together some images and suggested text to share during TOFS Awareness Week. 

Please also make sure you are following TOFS on Facebook, Instagram, Twitter and LinkedIn and share our posts on there too.

					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. #tofs #tof #oa #oatof #RareDiseaseDay #pleaseRT

Share your OA/TOF story

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.

Update your profile photo

Help us raise awareness of TOFS by changing your social media profile photo for a week. Choose one of of our designs below. 

TOFS Awareness week profile

Blank – Add you own photo (software may be required)
Download this image

Spread the word!

Order your OA/TOF wristband, car window sticker or bib to help raise awareness of the condition.

Watch out for the launch of our exciting Easter Raffle on Monday, 27th Feb!

Rare Disease Day (28 Feb 2022)

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. #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.

You can find out more about all the Rare Disease Day events here

Thank you for all your support