Welcome to the world of Dazzle4Rare, an annual event that unites the *URCIID communities since its inception in 2016. This heart-warming initiative, backed by passionate co-hosts and participants, showcases the power of collective voices in raising awareness and fostering solidarity.
2016: Lighting the Spark
In 2016, our inaugural hashtag event #Dazzle4Rare, under the wing of HESA, Kimberly began to lay the foundation for an journey that would ultimately be shared with thousands of people worldwide.
Below you can hear more about the circumstances that lead to the creation of #Dazzle4Rare. ⬇️🎧
Though hosted on Facebook Events through the HESA Facebook Page, its reach extended beyond the HE/AE community on Facebook. With a humble beginning featuring four co-hosts, two of which were individual advocates for larger communities, the event has gained steady momentum since the start.
Back then, the challenge was immense – spotlighting over what we then believed were 5k to 8k rare diseases affecting 1 in 10 Americans [Source: Global Genes]. Despite the odds we faced reaching new networks, #Dazzle4Rare emerged as a tiny call to amplify unheard stories and seeking to unite global communities.
The challenge lies in reach outside our usual 24/7 support forums and groups and our typical social posting. We’d been living in a vacuum. The D4R response was and has been to form a powerful global community, amplifying messages that would otherwise remain unheard.
2017: #Solidarity
The following year, Dazzle4Rare embraced unity, drawing together five co-hosts. HESA took the lead, rallying a coalition of advocates including Mark2Cure and Monica Yen. This event’s core focused on Twitter, with the Facebook Event page as a hub. Each tweet, post, like, and share echoed a resounding message of unity, extending beyond individual conditions to elevate rare diseases collectively. Facebook saw 49 attendees, marking an important step in our journey.
You can find the full co-host list on #Dazzle4Rare 2017.
You can find more about the 2017 event on the old HESA website courtesy of the Wayback Machine – Internet Archive.
Participants were invited to contribute through the #Dazzle4Rare 2017 campaign via Daycause (in 2016 we used Thunderclap). Daycause has been a part of something called a “social speak” or “shout” campaign asking individuals social media users to sign up to have a specific message posted to their social media timeline all at the same time – essentially dozen, hundreds, maybe thousands of the same message blasted across timelines at the same time.
The concept is GREAT but ended up being fraught with issues. We have not used this service since but love the idea!
2018: Forging Our Unbeaten Path
In 2018, Dazzle4Rare embraced new collaborations with partnerships like Dante Labs. We were excited to be tagged on a Facebook Live hosted by media personality, published author, and wearer of many advocacy hats, Barby Ingle. She and her husband Ken mentioned #Dazzle4Rare during their live and we were SHOOK!
Listen to Barby Ingle talk about her introduction to #Dazzle4Rare.
⬇️🎧
This year marked the debut of our first press release, enhancing our reach. Amidst the challenge of spotlighting new-to-the-event conditions, increasing reach, strength, new contacts, and engaging more people. With co-hosts including ANE International, PTEN Hamartoma Tumour Syndrome Foundation, and many more, we joined forces to make our voices heard.
You can find the full co-host list on #Dazzle4Rare 2018.
2019: Overcoming Hurdles
Despite setup challenges, Dazzle4Rare surged forward in 2019. Held over seven separate days on Facebook, logistical intricacies couldn’t deter our commitment. Advocates and organizations embraced the event, united by a common goal. Gathering over 213 registrations of interest, our collective spirit remained unwavering.
The setup challenges notwithstanding, co-hosts such as The Anti-NMDA Receptor Encephalitis Foundation, Inc., Team Derya, HESA, PTEN Hamartoma Tumor Foundation, and Diagnosed with Destiny played pivotal roles in amplifying the event’s message. These co-hosts, along with others including Rare Disease Connection, Central Pain Nerve Center, Mark2Cure, Gastroparesis: Fighting for Change, and many more, convened to disseminate messages of resilience and unity. Their collective efforts encouraged likes, shares, and retweets across social platforms.
Find the full co-host list on #Dazzle4Rare 2019.
Perhaps in part due to break-neck email and DM outreach by Kimberly, the hashtag event garnered impressive statistics from our co-hosts and everyday folks participating:
- 9.1k impressions on Facebook.
- Over 700 Facebook Event page views.
- Invited 217 individuals, with respondents comprising 21% male and 79% female.
- Attracted an audience that was 79% female.
We asked folks to share their own stories and facts under the hashtag #Dazzle4Rare, uniting a small corner of the URCIID internet in solidarity. While technical issues were were a pain, the event’s core purpose remained – uniting the global undiagnosed, rare disease, and associated communities to reach more people for our common causes.
2020: Triumph Over Adversity
Amid the COVID-19 pandemic, Dazzle4Rare stood resilient in 2020. Although we faced challenges such as the loss of friend and hard-core D4R advocate, Kimberly Amelia Hartmann. Our compassionate community really pulled together during this painful time with 96 Facebook Event attendees. This year marked another testament to our global community and their shared dedication to the cause.
We reached an all-time high in co-hosts, including Medics4Rare, Rare Disease Connection, United Advocacy Australia Together We Stand Hand in Hand, Rare Disease Ghana Initiative, Team Derya, Cambridge Rare Disease Network, Rareshare.org, Rare Youth Revolution and Rare Revolution Magazine, ANE International, Ataxia and Me (Wales), Gastroparesis: Fighting for Change, Neo-Walk walking sticks, Students for Rare Diseases, iPain International, HESA, Ring20 Support UK, AKU Society, and PTEN Hamartoma Tumour Foundation. Amidst challenging times, this alliance of voices demonstrated remarkable solidarity.
See #Dazzle4Rare 2019 for a full co-host list.
The event hashtag achieved over 3.16 million Twitter impressions thanks to our amazing co-hosts and the general URCIID public through their shares, engagement, and support. This was a remarkable that could only be achieved together as a wider community.
Just think, if only 1% of Twitter users alone engaged with our hashtagged messages, we’d have made a significant worldwide impact of potentially 31,600 people.
The event say 2K unique tweets, not counting retweets from 185 Twitter users.
2021: Impactful Partners
In 2021, Dazzle4Rare continued with co-hosts PIP UK, Rare Disease Connection, and Male Lupus Warriors who came together to amplify URCIID messages. The event resonated with over 300 invitees. Among them, 207 registered their interest, while 96 marked their interest. The hashtag achieved an impressive 9.4 to 9.5 million Twitter impressions [Source: Symplur Healthcare Hashtag Project], solidifying the event’s impact.
For Symplur data shared to the event and full list of co-hosts, see #Dazzle4Rare 2020.
We welcome brand RARE. and Kristine Hostermann to our event and our IG Live that week.
2022: Expanding Reach
The year 2022 witnessed the event reaching new heights. Dazzle4Rare harnessed the power of diverse co-hosts, including Central Nerve Pain Center, Gastroparesis: Fighting for Change, and Rare Revolution Magazine. The hashtag #Dazzle4Rare2022 achieved an astonishing 9.4 to 9.5 million Twitter impressions [Source: Symplur Healthcare Hashtag Project], illustrating the far-reaching impact of our collective efforts.
You can find the full co-host list and attendee info at #Dazzle4Rare2022
Out of 189 people invited on Facebook, 91 registered their interest by clicking “going” while another 98 marked their interest, highlighting the strong engagement within the rare disease community.
We coul not have survibed this week without the help of #TeamDazzle member, Kerry Wong.
2023: Navigating Change
In 2023, Dazzle4Rare navigated changes and challenges while maintaining its spirit of unity. As the event transitioned to dazzle4rare.net [Source: Chat Conversation], co-hosts and participants adapted, showcasing their resilience. The @Dazzle4Rare presence on Facebook and Instagram garnered over 1.9k impressions and 329 on Instagram. On Twitter (known as X in 2023), the hashtag #Dazzle4Rare2023 achieved a remarkable 7 million impressions, fueled by 2.7k unique tweets authored by 119 users.
While Twitter (now known as X) impressions went down, due to the numerous changes we’re plesantly surprised to see so many impressions were still achived, despite the struggles we are all experiencing with the platform under new ownership as of September 2022.
Finally …
Embarking on its journey in 2016, Dazzle4Rare has blossomed into a force of unity and collaboration in the URCIID communities. From its roots in 2016 to today, each year has been an exercise in collaboration and trust. Through hashtags like #Dazzle4Rare, our message has resonated, spanning millions of impressions and fostering a community that stands as a spark of hopeare diseases.
We’re grateful to our co-hosts and growing D4R network. This “one-off” event #Dazzle4Rare has proven that we can create change for ourselves together.
*URCIID stands for Undiagnosed, Rare, Chronically & Invisibly Ill, and Disabled (Humans with Disabilities)
- URCIID stands for
