With Rett Syndrome Awareness Month right around the corner, I figured we should talk about a meaningful way to better disseminate your Rett-specific posts to reach the masses: hashtags.
Let me begin by reminding everyone that each person's level of participation is personal. I'll be honest, last October I didn't try much. I didn't want to do anything extra. But, for some reason, this year, I feel differently. And that's okay for people to change year to year! So, I don't want you to read this post as if I'm calling people to action - no, not at all. Instead, I want this to be a resource for those who want to do something this year.
Alright, let's talk hashtags.
How they work
Firstly, it's essential to understand how hashtags work. A hashtag is used to group content and discussions, so they are easily searchable. For example, you're having a conversation on an Instagram post about different types of bath chairs for your special needs family member, but at that moment, you're not able to look into the information that's been shared with you. So, you could use a hashtag (such as #bathchairsuggestions) in your replies to simply search for that hashtag after the fact to revisit the conversation.
Easy, right?
Fun fact!
Hashtags were created in 2007 before an event called BarCamp. You can learn all about hashtag history & use on this episode of 99% Invisible (which happens to be one of my & Sarah's favorite podcasts!)
Another fun fact: Those of us born before the year 2000 probably cringed for quite a while when hashtags first became popular because we all knew the '#' as the pound sign. But its original name is actually the octothorpe. So, our displeasure was unjustified because we weren't using the original name either. 😏
Which #?
Now back to our regularly scheduled program.
I'm sure you're familiar with more mainstream hashtags like #ThrowbackThursday or #PhotooftheDay. I see these across all social media platforms - and most of the time, it's for accounts that I don't even follow. And this is how you can use hashtags to connect beyond your immediate group of friends & followers.
Sidenote
For hashtags to reach beyond those with whom you've already connected, you'll need to ensure your privacy settings are appropriate. For example, on Facebook, you can select different levels of privacy with each post. If your goal with a post on Facebook is to reach people outside your circle of friends, you'll want to make your post 'Public.' Similar settings can be found on other social media platforms as well.
Now, you can create your own hashtag if you'd like, but I recommend using ones with a substantial following. Creating your own is excellent for people interested in following your story and content. However, it takes time to connect with people.
Here's a list of the top 10 hashtags you should use in all your Rett awareness posts:
I know what you're going to say, and yes, I realize that some of the hashtags are not Rett syndrome specific. But there's a reason for that.
Remember when I said we need to use established and well-followed hashtags to connect with people beyond our immediate circle? By using other hashtags that are not Rett-specific but adjacent, you are more likely to connect with someone unaware of Rett syndrome. Example: A pediatrician follows #pediatrics on Instagram; they are randomly shown posts of doctors being successful in their practices, fun ways to interact with young patients who are receiving a vaccine, and now, a post about Rett syndrome because you used #pediatrics in your post. And hey, maybe it gets even better because this pediatrician who knew nothing about Rett has a patient presenting symptoms - how great would it be to bring awareness to a professional!
There are also some more specific hashtags that I recommend using that are focused on the Rett syndrome community. These hashtags are well established and can potentially connect you with people you didn't previously know:
You can expand a hashtag, like #curerettsyndrome, to connect with more people.
#rettsyndrome[COUNTRY]
Include your country name to connect with other Rett community members near you.
Time to get posting!
I'm no marketing expert. However, I know that the more I post about Rett syndrome, the more people I connect with. Consistently I have friends and family who reach out to me after a Rett-focused post and share that they appreciate my efforts to bring awareness to the disability or acknowledge that my post was the first time they were made aware of it.
It's gratifying.
If you want to look at more hashtags, check out this website; they even have a nifty tool that lets you copy all their recommended hashtags so that you don't have to type them out on your post!
Good luck with your posts, and if you have success with one, be sure to share it in the comments below.