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How to get involved in Rare Disease Day

TOFS Awareness Week & Rare Disease Day 2023

Did you know that TOFS Awareness Week (26 Feb – 4Mar) is timed to take place around Rare Disease Day? On Tuesday, 28th February this global initiative will aim to increase awareness of best practice among healthcare professionals and help them work together to support people with rare conditions.

There are plenty of ways to get involved with Rare Disease Day 2023. Here are just a few of them.

Share your story about )A/TOF

Share your story

Can you share your story with us to put on our website and our social media? You can read our current stories here

Contact the office to share your story.

light up for rare disease day

Light up for rare

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 here

Baby Leo - Born with OA/TOF

Share your photos

Do you have any photos of yourself or your child that you would be happy for us to use around Rare Disease Day / TOFS Awareness Week or for us to use in our other comms throughout the year?

We are looking to highlight what it means to live with a rare condition and the importance of coordination of care, and high quality photos will help us to do just that. You can also share them on your own social media and tag us in.

Send your photos to the TOFS office.

I Support Rare Disease Day!

Join in on social media

On Tuesday, 28th Feb make sure you are following and tagging @RareDiseaseUK in all your #RareDiseaseDay2023 posts and like and share other posts you see. Don’t forget to use the hashtags #CareForRare #RareDiseaseDay2023 and #RareDiseaseDay.

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