Dazzle4Rare is a special week for all sorts of organisations and individuals, non-profits, charities, and individuals, to join in sharing messages for each other with their own networks. This way, more people who are already sympathetic to rare disease can learn about these conditions through this exchange.

To have your organisation or advocacy showcased on this website, see our Registration link. Complete the form and submit your information easily!

How Does this Work?

During the week, organisations, advocates, and individuals alike agree to share messages from others groups. This is one week of the year to take a short break from posting the same content that you normally share with your network (family, friends, support forum, etc.) and share content from other rare and associated communities.

Think of it like a gift exchange.

Everyone brings a gift (their message), puts it in the pile (submits their 280-character message), and everyone picks from the pile (messages) and shares with their family and friends via their social media platform(s) of choice.

An infographic which reads, "How it Works." Below there are icons to represent organisations, individuals with messages going to Dazzle4Rare. Those messages are then exchanged and posted on social media.
How it Works infographic

Follow Posts via the Hashtag

Everyone can follow the hashtag #dazzle4rare on Facebook, Twitter, Instagram, and TikTok to find messages to share. Non-profit organisations can become a co-host for the event on Facebook.

You don’t have to be a co-host or an organisation to participate. Any one can by sharing their own content with the hashtag or resharing posts with the hashtag so that their family, friends, and co-workers can learn more! Knowing that 1 in 10 Americans and 1 in 17 UK residents have a rare condition, you’re likely to know several people who have a rare condition!

It feels great to see something on social media that you can relate to personally. Think about how much easier your diagnosis or that of a loved one might have been if you had seen information about it every where!

That’s the goal. We want to share that experience with as many people as possible so that more people in our communities feel seen, heard, and understood.

The only way for this to work is if everyone who submits a message also shares at least one message from another group.

During #Dazzle4Rare, create your own social media posts and use the hashtag so that others following the event can see and share them with their networks.

An infographic showing an explanation of what #Dazzle4Rare is. There are 5 coloured banners to the left which read, "give a  message, pick A message, post a message, (Optional)
Schedule Posts, and (optional)
follow #dazzle4rare." 

To the right, there is a wheel graphic that shows details on each step which reads, "submit your short but important message, pick a message(s) from the approved messages list, During the event, post the message to your Network on your social platform(s) of choice, Speed things up by scheduling your event-week posts before the event to save time,  and Follow the hashtag #Dazzle4Rare and keep sharing any posts you like!"
#Dazzle4Rare Infographic

This is one of the most educational parts of #Dazzle4Rare as it allows people to learn about different conditions and connect with others who care deeply about them. It’s a great opportunity for advocates to form lasting bonds and continue raising awareness outside of the event week.

If you have any questions, don’t hesitate to contact us at

Dazzle4Rare text-only logo on white background. It reads, "Dazzle4Rare We are Rare Family"

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