Rare Disease Day is on Friday 28th February 2025.
The day provides a brilliant opportunity to help raise awareness of leukodystrophy, and you can support us by….
Sharing your experience for ‘More than you can imagine’
This year’s Rare Disease Day theme is ‘More than you can imagine’. Our campaign which focuses on raising awareness of leukodystrophy by sharing about people’s experiences of the condition.
Thank you to everyone who has got involved! Throughout the day we will be sharing words from our community members, team members and our wider community. You read them here: Leukodystrophy is more than you can imagine
We’ve created a poster for you to share how leukodystrophy is so much more than you can imagine. Just follow the steps below:
1. Download our A4 poster to print or edit digitally
2. Write or type a word on the poster
3. Take a photo or video
- Option 1: Take a photo of you and/or your loved one holding the poster. Then, write a paragraph explaining why you chose that word.
- Option 2: Record a video of you and/or your loved one talking about why that word was chosen.
4. Send it to us
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Option 1: Email your photo and paragraph or video to info@alextlc.org.
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Option 2: Post it on your own social media on Rare Disease Day (28th February). Don’t forget to tag us and use the hashtags: #AlexTLC #Leukodystrophy #RareDiseaseDay #RDD2025
- Option 3: If you’ve edited the poster digitally, you can send it back to us along with your quote and a photo to use alongside it.
If you’re unable to use the methods above but still want to take part, please email us your word, quote and photo, and we’ll do the rest.
Lighting up our stained glass window
Our Light Up for Rare stained glass window is almost complete! Can you help us fill it? You can donate an amount of your choice from just £2 and even add a photo and meaningful message.
Using our social media frame
Help to raise awareness of leukodystrophy on Rare Disease Day by using our free social media frame on your social media profile pictures.
Please note, we have removed ads from our account as we know some users experienced issues with these last time.
