Frequently Asked Questions


Since our start in 2016, we’ve been on a mission to change the world for the better by connecting non-profits, advocacy groups, advocates, and allies for rare disease and related conditions. Over the years, we’ve received many questions about what we do, how we do it, and why we do it. Keep reading to learn more about the exciting work we’re doing to make a difference!

What is social media posting?

Social media posting is a way to share content with others online. When you write or share a public post, people can see it and react to it by liking, commenting, or sharing it with their own followers. This is called engagement, and it helps your post reach more people. The more engagement a post receives, the more likely it is to show up in other people’s feeds, and the more people it will reach.

For rare and associated condition communities, it can be difficult to build “engagement” when people regard our conditions are uncommon, or something they’re not likely to be affected by. The reality is, 1 in 10 Americans will experience a rare condition1, and 1 in 17 people in the UK will encounter a rare condition in their lives.

What is social media engagement?

Social media engagement is when people interact with or respond to the content you post on social media platforms, such as liking, commenting, sharing, or following your page. We started this unique event because on our own, many of our organisations and communities get very little social media engagement, inside and outside of their communities.

It can be hard to encourage everyday patients, like ourselves, to engage with posts and share them. We’ve all experienced a lack of interest from the people in our lives. But don’t be discouraged! With our power in numbers, over 300 million rare people around the world, and with out perseverance, our messages will break through.

We know it’s hard. We know it’s exhausting. But the work is worth doing. Imagine how long it has taken to make positive movement in other areas of life like Civil Rights. It can take decades to make progress. We’re here. We matter. Our stories are as universal as they are unique.

What’s the history of Dazzle4Rare (D4R)?

In the dead of night, founder of the hashtag #Dazzle4Rare, Kimberly, had an epiphany. She realized that social media was all about engagement. Simply posting information wasn’t enough – people had to engage with it by sharing, liking, and commenting.

As the social media strategist for non-profit organization Hashimoto’s Encephalopathy/SREAT & Seronegative Autoimmune Encephalitis Alliance, Kimberly struggled to get people to engage with their posts. It was frustrating because a lack of engagement had real-world consequences. Patients were dying due to a lack of awareness, and people weren’t engaging with the organization because they didn’t know what HE/SREAT was, what HESA did for patients, and why any of this was necessary and important.

This problem was happening in many other small communities too. To overcome this vacuum, it was essential to reach outside our communities and connect with people who already empathise with us. Kimberly knew that the only logical way to do this was to encourage people to engage with and share each other’s posts. By working together, we can reach a wider audience and create a better world for everyone.

Thus, the event was born.

Read our first press release for our second year of the event.

How can I (an individual) participate in D4R?

Individuals can participate in #Dazzle4Rare by following the #dazzle4rare hashtag on social media and sharing posts or adding their own relevant posts.

We like to say, “Search, Scroll, and Share.” It is that easy. Search the hashtag #dazzle4rare, scroll through posts on Facebook, Twitter, Instagram, and Pinterest, and share the posts you want to share!

How can my non-profit/advocacy group participate?

We’ve recently added the ability to self-register as a Facebook Event co-host. You can click our Registration link and submit your details. A member of #TeamDazzle will review your details to ensure everything is complete. Once approved, your Profile page will be added to the Co-Hosts Directory.

In the past, we would manually add organisations and advocates to the page. However, this was time consuming and unreliable due to human error. You can now register and update your own information in your own time before and through the event.

Please be sure to submit your logo when you register as these may be used to add your logo to our event promotional assets which are used by organisations and advocates during the week to accompany your critical message for the event.

Why does our organisation / advocacy group need to submit a 280-character message?

Simply put, if you don’t share a your message, there is nothing for others to share on your behalf.

Think of it this way: you meet a stranger and have only two or three sentences to describe to them what is critically important that they know about your condition, your non-profit or charity, or the work you do in rare disease. Your message should distil the most critical thing you need the family and friends of other organisations and advocates extended network to know.

Only you can decide if the message is effective or not. We all want to find treatments. Many folks want to find cures. None of us benefit from sharing messages that are too vague or don’t hit home the point your organisation or advocacy is trying to make.

Is Dazzle4Rare a registered non-profit organisation?

We have not incorporated in any country, including the UK, due to our participants being located in various countries and varying tax exempt incorporation laws. While UK charities can provide grants to charities abroad, this involves navigating complex regulations. D4R is run primarily by founder Kimberly Thomas-Tague, who does not have the financial or personal bandwidth to navigate these requirements. Instead, she works with patient-centric companies to fund Dazzle4Rare initiatives

What is a grassroots organisation?

According to Wikipedia, a grassroots organisation is:

A grassroots movement is one that uses the people in a given district, region, or community as the basis for a political or economic movement*. Grassroots movements and organisations use collective action from the local level to effect change at the local, regional, national, or international level.

Wikipedia entry for Grassroots
* in our case it is a social movement

Does D4R fund raise?

Yes and No.

D4R is happy to accept monetary support to help continue to organize the event and support non-profit organizations, advocacy groups, advocates, and allies. During Dazzle4Rare 2020, funds were raised through a raffle of merchandise designed exclusively by and for D4R. The organization does not seek profit but welcomes assistance in the form of volunteers and support.

Do you have a question we have not addressed here? Please send us a message from the Contact page! We would love to answer your question and add your question here for others.

1 NORD Rare Disease Day PDF

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