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Heterotaxy Awareness 2024

Every year on May 4th, we celebrate Heterotaxy Awareness Day as a community. Since heterotaxy remains a relatively unknown rare disease, we are committed to getting the word out, and we invite you to join us! Below you'll find some resources to get you started, but raising awareness is about creativity, so the sky's the limit. More resources will be added as we approach Awareness Day, so be sure to check back.

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Do you have a school-aged heterotaxy kid? These activity sheets would make a perfect addition to an explanation of heterotaxy for their classmates!

What better way to celebrate Awareness Day for a syndrome marked by random organ placement than with random acts of kindness? We've put together a little pdf with some cards you can print out and share while you spread both love and awareness to those around you. Just click on the image to the left to download the file!


One of the easiest ways to get the word out is through social media. Post to Twitter, Instagram, or Facebook using our hashtag: #HAD2024. Search for the hashtag and share some posts from other heterotaxy families in order to increase their exposure.

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