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TOFS 2023 Awareness Week Round-up

What a week! Thank you to everyone who got involved. Whether that was through sharing our posts, starting a fundraiser, writing to your MP, or sharing your story. You have all helped to raise the profile of OA/TOF.

Here’s a quick round up in case you missed any of what we got up to.

Watch our new video and hear from members of our adult OA/TOF community.

Thank you to Kate, Fiona, Shaun, Amber, Olivia, Heather, and Scott for taking part and sharing their stories.

We will be releasing some of their individual videos in full over the next few weeks so please keep an eye on our website or subscribe to our YouTube channel to stay up to date.

International Rare Disease Day

Over 300 million people are affected by a rare disease around the world. On Tuesday, 28Feb, many TOFS members took part to help spread the word and share the message across social media.

A global chain of light took place to show the solidarity of the worldwide rare community. In the UK, this included Council House in Nottingham, the home of TOFS.

Council House in Nottingham, Rare Disease Day.
Council House in Nottingham, lit up for Rare Disease Day.

Win with TOFS!

This week also saw the launch of the TOFS Easter Raffle.

The top prize is £250!

It’s not just the about the jackpot though. We also have over 30 other great prizes up for grabs including; family days out, gift cards, flowers, wine, and (of course) an Easter Hamper!

We calculate the total prize pot value to over £1,500 so at just £2.50 a ticket, it is definitely worth a go!

Please share the raffle with your friends and family too. It’s an easy way for them to support TOFS.

New resources released

This week also saw the launch of three new resources.

The first, is our handy sized OA/TOF Health Passport. This small 4 page booklet is perfect to quickly share information about your own or your child’s OA/TOF. 

Order yours from the shop.

Our second new resource is our OA/TOF travel guide. A super helpful document full of hints and tips about travelling abroad with child born with OA/TOF.

Download it here

And finally, we have also released a new pocket sized “Travel Comfortably” information card to help adults born with OA/TOF .

This new card joins are existing information cards:

  • “TOF cough explainer”
  • “Swallowing food can be hard for me”
  • “Urgent toilet request”

All cards are available to order from the TOFS shop individually or as a pack of 4.

Thank you again to everyone who took part.

But don’t forget, even though awareness week is now over for this year, you can still share our updates, videos and resources to continue to help raise awareness of OA/TOF.

Make change happen – contact your MP

We are calling for consistent lifelong multi-disciplinary care for people born with OA/TOF regardless of their age, or where they live in the UK and you can help.

Download our suggested letter and send it to your MP or local representative to highlight our cause and to see positive change in how OA/TOF is treated in the NHS.

You can also read about TOFS’ TLC Naomi Webborn’s recent visit to the Welsh Parliament on our site.

Share with your GP

Did you know TOFS has a dedicated digital library for medical professionals? Ask your GP to sign up here.

Please also share our “Adult OA/TOF Management Handbook”. This digital handbook can help fill the knowledge gap and help medical professionals understand, treat, and signpost treatment to the appropriate specialist when needed.

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