Dazzle4Rare works because you do.

Friends hands together forming a heart in front of sunlight.

The aims of the Dazzle4Rare shall be to 1. amplify the voices of undiagnosed, rare, chronically ill, and invisibly ill patient populations through effective use of social media tools, 2. educate undiagnosed, rare, chronically ill, and invisibly ill patient populations on the importance of advanced diagnostics, primarily genome sequencing and related technology, to help patients personally achieve better health outcomes for themselves and/or loved ones, and 3. create strong undiagnosed and rare community networks and bonds to help carry forward our goals and objectives indicated herein.


Many of us as allies, advocates, and NPO teams have witnessed just how difficult it can be to successfully reach the general population with our messages. If you’ve engaged in awareness activities, you know how difficult, and costly, to reach local media outlets, create content which has “viral” internet potential. With Dazzle4Rare, our organic approach to signal boosting messages is a “do-it-yourself” approach to overcoming these obstacles.

Our participants represent a diverse group of non-profit communities, patients, and caregivers across genetic and acquired conditions. Together we finally have a voice in our numbers, using a social-strategy to reach each other’s friends and family networks. Family and friends are the intended audience and where all the power in awareness raising lies. We are sharing each other’s stories, and in a way, we’re sharing our own – as a largely dismissed demographic of people with diverse needs who are under-served by governments around the world.

We have an opportunity to raise a greater awareness. We have an opportunity to be heard, finally. We can join hands and reach around the globe to share our messages with those who would otherwise never hear about many of these conditions. The more we speak up and speak out, the more likely we are to reach those who may need to hear
our message the most.

What’s not to love about that? 

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 growing list of partners. 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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