Tell your story

Participants in Rare Disease Day from around the world have shared their personal stories about living with a rare disease.

Click below on the latest photos, videos and stories to learn more. If you would like to share, send us your story, video or photo and it will be shared on the Rare Disease Day YouTube and Flickr pages. To find an online community for your disease or form your own, visit

Upload your photo Upload your video Write your story