World Alström Syndrome Day
World Alström Syndrome Day
Join Together on World Alström Day – 3rd May 2026
Carl Henry Alström was a Swedish psychiatrist who first identified and described Alström Syndrome in 1959. His work brought attention to this rare genetic condition, helping to improve understanding, diagnosis, and care for those affected. Today, his legacy lives on through continued research, clinical care, and the global community working to support individuals and families living with Alström Syndrome. On World Alström Day, celebrated on the 3rd May Carl Henry Alström’s birthday, we recognise his contribution and raise awareness of this rare condition.
How you can get involved
This year, we are inviting our community to come together and raise awareness across the world.
From the 1st May 2026, you can take part by:
- Downloading the graphics below
- Sharing a post on social media with a graphic from the 1st May 2026
- Joining us by spreading the word on World AS Day on the 3rd May 2026
- Using the hashtag #WorldAlstromDay
- Tag Alström Syndrome UK in your posts, so we can share and spread the awareness even further
- Sharing your story, a message, or simply spreading awareness
- Sending us your photos or quotes to be featured on the day, send to Catherine by email catherine.lewis@alstrom.org.uk
You can find the social media pack below with ready-made graphics and messages for you to download and share. You can also download graphics to add your own photos and experiences to share with the community.
Simply click on an image, save and share to social media, using the hash tag #WorldAlstromDay and don’t forget to tag us in your post so we can share too!
You can download the images below, and add your own photos and experiences to share.
Together, we can make Alström Syndrome more visible so no one feels alone.
Hear from our Global Alström community below:
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One of our families who has recently been diagnosed gives her thoughts on the service she has received at one of our Alström Syndrome UK highly specialised clinics, and this reminds us why we do, what we do!
“As much as a rollercoaster ride it feels for us emotionally and physically, we are so lucky to have such an amazing team behind us supporting us every step of the way. Yesterday we got the chance to meet other families with Alström Syndrome and immediately felt the support and comfort from hearing one another’s stories and similarities to not feel alone on this journey. And to hear such a wonderful voice from one of the children singing to us all ‘it’s the climb’ song by Miley Cyrus almost had me in floods of tears and found inspiring because our children and adults that have Alström are true warriors, keep strong, keep climbing to reach your goals. Together we stand united. Thank you so much for all the help, you’re all truly amazing”.
All our families are individual and with Alström there is no one size fits all!
Feature in the Campaign
You can send your photos and quotes to be shared in the campaign to Catherine by email catherine.lewis@alstrom.org.uk
A rare condition. A global community.
