Rare Disease Day 2024

Information about how you can get involved this year

It’s less than three weeks until Rare Disease Day on Thursday 29th February. We are sharing about the different ways you can get involved.

The day provides an opportunity to help raise awareness of leukodystrophy and you can support us by….

Sharing your story

You can get involved by sharing your story to help raise awareness of leukodystrophy and the impact it’s had on you and your family. We would also like you to share how long we’ve been supporting you for and the ways you’ve been involved in our community. If you are interested in sharing your story, please email info@alextlc.org by Monday 12th February.

Lighting up our stained glass window

Please join us in brightening up our stained glass window for Rare Disease Day. You can donate an amount of your choice and add a photo and meaningful message.

Help us by lighting up our window

Using our social media frame

Help to raise awareness of leukodystrophy on Rare Disease Day by using our frame on your social media profile pictures. Download our social media frame and help to spread the word!

Get yours here: RDD Frame

Sharing our social media posts

Help us to raise awareness of leukodystrophy by sharing, liking and commenting on our posts on Rare Disease Day. Let’s see if we can beat last year when our posts were shared, liked and commented on over 175 times.

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Alex - The Leukodystrophy Charity