Dazzle4Rare was established in July of 2016 with a simple goal of signal boosting rare and undiagnosed community messages. Since that first event, we have been working with allies, advocates, small and large non-profit organisations, and others who wish to elevate rare and undiagnosed voices.

Every August, we will be tweeting, posting, liking, and sharing for rare disease.

According to the World Health Organisation, “A very rough estimate would be that one out of 15 persons worldwide could be affected by a rare disease – 400 million people worldwide, of whom 30 million are in Europe and 25 million in the United States”WHO Priority diseases and reasons for inclusion

Now, more than ever, we have an opportunity to raise a greater awareness as a larger community. While each community has their own unique voice, concerns, and needs, by creating a larger community for one week a year, we can spread awareness together and for each other. The only barrier to doing this is the desire, not geography or funding – sharing is free.

If you would like to participate, it’s simple! You can like, share, and retweet any of the posts on our social media pages or those of our partners (see our Participants page for more information). We also encourage you to share information about rare disease, your own story, or educational links and information for everyone to learn more – all using the hashtag #Dazzle4Rare.


Tag your selfies. Tell your rare disease story. Raise awareness.

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