Dazzle4Rare 2020 Logo - image of yellow paint splash with grey zebra overlay. Words read, "We are the dazzle."

There are a lot of ways to participate in #Dazzle4Rare every 2nd week of August! Here some of our top tips for organizations and individuals!


As an individual: you can follow the Facebook event page for each participating communities approved messages (or see our Approved Messages page.) You can join the event and click “going” to show your participation as well as stay informed of what’s going on with the event.

Also, we have a mobile-phone friendly page on this website that will walk participants through the steps of choosing Facebook, Twitter, or Instagram to reshare posts. Once you click the social platform icon of your choosing, you can scroll through the posts hashtagged #dazzle4rare (each link takes you right to those posts directly), and then reshare as you normally would.

Note: For Instagram you would need Regrann or a similar resharing program or using screenshots.

Of course any person is welcome to create their own rare disease related posts and hashtag #dazzle4rare that week so that those following the hashtag can reshare.

We try to reshare as many messages as we can and always encourage individuals to share their own stories. One of the most educational parts of #Dazzle4Rare is people sharing their own stories. If not for that, many of us would not have learned about many of the conditions we now have come to care deeply about. It has also been a great way for advocates to get to know one another and form lasting bonds and create opportunities to continue to raise awareness outside of #Dazzle4Rare week. For those who would like to be entered into the participant free raffle, you only need to contribute one message to be entered. That message must be a community message, or your own rare disease message, using the hashtag #dazzle4rare and tagging our official account on the platform. That way we are able to tally the entries and do a random drawing after all entries have been counted.


As an organisation: We welcome any organisation who would like to participate to become a co-host. There is no cost associated with being a co-host on our Facebook event. This opportunity is open to any official Facebook page. That provides the opportunity for the organisation to post directly to the event with their approved message or announcements for the week. This way, individuals who have clicked “going” and are involved in the event can simply share from your posts to the event page.

You may also generate your own content and use the hashtag #dazzle4rare. However, we very much encourage groups of all sizes to share other groups messages as that is the way we amplify one another.

Many organisations spend the whole year “preaching to the choir” about our own conditions. In that way, we limit the number of people who hear our crucial messages. This way, organisations can share other organisations messages with the folks who are likely to care most about other rare and undiagnosed communities or who may need to hear these messages. Again, many people have learned so much about conditions they never would have heard of outside of the event. So please share each other’s messages – NOT JUST YOUR OWN! This is how we elevate one another.

If you choose not to become a co-host, that’s ok too! You can always keep an eye on the hashtag #dazzle4rare on Facebook, Twitter, and Instagram and share other communities messages as you see fit. The non-profit/registered charities (must be registered as one of these in your country)  who share other community messages the most that week will be entered into a small raffle. We’ll be selling limited edition Dazzle4Rare items and the profits will be donated to the winning NPO/charity. We’ll keep everyone posted on this and our patient raffle on the FB event page.

Any questions? Please don’t hesitate to Contact us.

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