We’re only a few weeks away from 16 May and hae day :-) where we celebrate the HAE community and focus on awareness-raising efforts.

So far, we’ve had more than 270 images posted to our gallery and more than 3,900 activities recorded since the activity challenge opened on 1 April. We’ve made some changes for 2025; read on to learn more!

Our #active4HAE activity challenge goes purple!

The #active4HAE activity challenge is back – but with a purple twist! We continue encouraging everyone to participate in physical and wellbeing activities and to use purple to show support. You can wear purple clothing or accessories, use purple equipment, spot purple in your activity environment, or get creative with anything purple during your activity!

Why purple?
Purple is one of the colors in our hae day :-) logo and has been adopted by many HAEi Member Organizations (MO) as the color they use in their activities for hae day :-) such as releasing balloons or lighting up buildings. It is also a color associated with rare diseases, as it is one of those used by Rare Disease Day.

Share your Insta story with our stickers
If you share your hae day :-) or #active4HAE pictures in an Instagram story, you can add one of our new stickers. Search for HAEi when creating your story to find and add the campaign GIFs.

Introducing a Personal Activity Goal in your profile
If you have a profile, you can now set a personal target for the number of activities you want to complete during the challenge. Each time you log an activity, it counts towards your goal and helps you stay consistent. Your profile’s new totalizer feature shows your progress – and you earn a new badge once you’ve hit your target!

All the features you know are still there
In your profile, you can earn badges by logging activities each week of the challenge and choose to support your Member Organization team, HAEi, or Youngsters. Each activity logged will contribute to your country’s total; anyone can add photos to our gallery. You can download #active4HAE image assets from our website to use in photos you share.

>> Share your awareness activity or event on our calendar page

Head to haeday.org to find out more!

Join the challenge and help us travel 3.5 times around the world and beat last year’s total!