Preparing for Dazzle4Rare 2023

Changes & Improvements to Participation

It’s almost time for Dazzle4Rare (D4R) again in August! Hoping you and your team are doing great!

A refresher, D4R is an event where non-profit organizations and condition advocates share each other’s messages on social media. The goal is to reach more people than ever across work, family, and friend networks. 

Example: Organization A posts Organization B’s message and vice versa. Post where you are: Facebook, Instagram, Twitter, Pinterest, Discord; it’s your choice!

We all know that there is never and will never be such a thing as “enough awareness.” It would be great to see the day when we don’t have to raise the flag on issues that affect our communities. Until that day comes we’ll all be here trying to reach more people. 

Invited Co-Hosts

Thanks to these fine folks: Rare Patient Voice, PIP-UK, Fibro Flutters, Ataxia and Me, and Rare Disease Connection for accepting the event invitation.

For the folks who have not accepted, go to the Event Page. If you are logged in as an admin for your page, you should see a message which reads, “The event host asked you to co-host this event. Co-hosts are allowed to edit and manage events.” 

If you’re logged in, it takes less than 30 seconds tops!

New Faster Way to Submit Your Message

Each year, co-hosts must submit a 280-character message to promote their organisation or work on social media. Kimberly has created a feature on dazzle4rare.net that allows hosts to add their logo and message themselves, eliminating the need to email changes. When submitting your 280-character message, keep it short short and include the #dazzle4rare hashtag and your own community hashtag to spread awareness about your cause.

Think of it as you 20 seconds to tell a stranger about what yo do and why. 

August is an opportunity to help others by promoting their causes and increasing your own outreach. To create your profile, go to the Dazzle4Rare registration page and complete the form. If you need help, email kimberly@dazzle4rare.net. Don’t miss the chance to reach more people and make an impact.

This Year’s Theme: Intersectionality

Since the start of the pandemic, non-profits have faced financial and social challenges, along with the communities we serve. Regardless of our resources, It’s important that we recognise that our rare family or condition-specific family are diverse and intersectional people. We all serve people of any ethnicity, age, or background. Rare doesn’t care if you have one condition or twelve! We can have a rare disease and also have Diabetes or heart disease. Together, we are a compassionate and welcoming space for our global community and we embraces our uniqueness.

Let’s talk about where we are now, where we overlap sometimes, and invite people to the discussions about our the many things that are part of our day, living at the intersection of Rare and Everything-Else. 

Content: Audio, Video, Steaming, Oh My!

We are always trying to improve our annual event. But with more people joining, it’s tough to know what each group or community wants. Some like live streams, some prefer to listen to audio, and others want written materials. We want to know what works best for you and your group so we can create better content for teaching and learning. 

We welcome your suggestions, especially on how to make our event and website more inclusive. Although we use English, we know that many people speak other languages. If you or someone you know can help us create tools in other languages, we would love to work with you. We are also committed to making our content accessible to everyone, as Kimberly talked about on the Signalise podcast.

As always, I remain grateful to each and every one of you. Though I frequently face the same challenges as you do, I aim to be available to you as much as possible. I cannot thank you enough for your continued support for this shared work we do and the lives it touches. 

With Love and Solidarity,

 
Kimberly Thomas-Tague
Human, Mum, Patient, and Founder of Dazzle4Rare

P.S. Typos are unintentional. I’m a patient too!