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TOFS Awareness Week 2024

26th February – 3rd March

TOFS Awareness Week - 26Feb - 03Mar, 2024

What's happening

This year’s TOFS Awareness Week runs from 26th February to the 3rd 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. 

Share our resources

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 both 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.

Get involved

Write to your MP, MSP, AM/MS or MLA

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

TOFS is 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.

Raise awareness

Rare Disease Day​

As part of TOFS Awareness Week we will be supporting International Rare Disease Day on the 29th February.

Please help us highlight the impact of rare diseases by sharing the messages on your social media on the day and joining the global chain of lights at 7pm.

Find all the resources here.

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.


Share our 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.

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. 

Raise funds

There are lots of ways you can fundraise for TOFS but here are just a few suggestions to get you started. See our fundraising section for more. 

Make a donation

It’s very easy to make a donation to TOFS, regardless of where you live in the UK, or worldwide. The easiest and quickest way to donate to TOFS is via BOPP using the banking app on already on your phone but we also accept donations via PayPal, bank transfer and cheque.

Click here to find out more.


Join a TOFS challenge event

We now offer access to a huge number of challenge events all across the UK – everything from inflatable fun runs to ultra marathons

Find an event near to you.

Hold a tea party for TOFS!

Invite you friends and family round and hold your very own “Tea for TOFS” tea party!

Start a Facebook or Instagram 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. Why not hold a fundraiser for a birthday or other significant date?

Thank you for all your support