Goodbye 2022

A conversation on the future of Rare social media

In 2022, many of us had our biggest and most chaotic year ever. Despite the ups and downs, we’ve made it this far together.  

We reach the end of 2022 the acquisition of Twitter and the firing of their entire accessibility team has lett the platform unfriendly if not unstable. If Twitter doesn’t survive or devolves into chaos, that may mean that our biggest year will have also been our last of rare disease signal boosting. 

We have a unique opportunity to make calculated moves together. I could be wrong but it feels like now coming together to make joint migrations could be what keeps us alive online where are communities are. An example is if 10 organisations move the majority of their group to another platform together, this user exodus of hundreds or thousands of users could create a noticeable algorithm shift. We could achieve more moving together than we ever have before.

We were able to unite as over 25 organisations this past summer. We reached the most people with our messages than we ever have before. If Twitter doesn’t recover, we risk this biggest year being our last. We cannot survive the fragmentation across various platforms without coordinating. 

I outline this in more detail in the next episode of Signalise: a #Dazzle4Rare podcast. At the end of EP10 I call to folks to unite to do this vetting for our communities together. Many of us are overworked, underslept, and exhausted; if we miss this opportunity, it may not come again in our organization’s lifetime. 

Quick platform performance breakdown

Twitter

This past year we achieved around 9.5 million Twitter impressions. If your message reached even 1% of that, that’s 95k users who may not have seen your message before. 

Facebook

On the Facebook event page, we collectively reached around 10k I would say. I don’t have the same tools that exist for Twitter so it’s harder to say but historically, Facebook has really only served as a hub for co-hosts and information and not as much as the hub of action that Twitter has been. I believe we may see this decrease as more of our posts are flagged up or reported as being medically controversial or as not being deemed accurate information. 

Instagram

This is another platform where we don’t have the same metrics as we do on Twitter with impressions. We’re stil in our infancy here and while it could be the next best place to grow, it may take another 6 years to achieve what we’ve done together on this platform. 

Platform vetting together

If finding a new home for your community and finding new ways to collaborate as a larger community online is important to you, reach out to kimberly@dazzle4rare.net or on LinkedIn.

If we can get even a handful of leaders who want to vet platforms together to leverage our power in numbers, let’s do that now. I’m open to Zoom, Teams, or GMeet to have a chat together about what we can do to plan the next steps. Take this chance to bring your ideas to the table and help bring your community into the next stage of rare disease on social media.