Finding connections & advocating has been so helpful for me.

Here’s a thread attempt, w/my limited/developing advocacy skills.

Tips/pointers/thoughts from #RareDisease, #chronicillness, #disability, #NEISvoid, #hcldr, #patientchat communities?

Let’s use #RareAdvocacyAdvice
My journey started with making social accounts, then posting a few thoughts, ideas, questions, & pleas for help. I used hashtags such as #RareDisease, #ChronicIllness, #Disability, #NEISvoid, in general, & then some that are more specific to my condition.

I was very fortunate to find an org that was developed to specifically for my #RareDisease (@MitoAction). They have incredible support, including weekly calls.

If there’s not a specific community for you yet, you could make one like @OnceUponAGene did. 💚

Find people to follow, interact with, support, be supported by. It’s imperative to find those who relate, help, listen, provide perspective, etc. Find your style, be you, stick with it. Also give yourself time, space, patience, & grace. It can be exhausting.

The advocates I continue to learn with & from are too numerous to list in full. Here are a few I admire (I’m sure they’ll have much better #RareAdvocacyAdvice than me!):

@Purrfectly_Rare @RarePOV @TiffanyKairos @Srotberg15 @lilannalaurent @Tinu @WhItscomplex @BarbyIngle @OdyO11
Some of them know me a little, some don’t. They all have unique causes & styles/approaches to the awareness they are bringing. Some may or may not even consider or refer to themselves as advocates. Nonetheless, I found them early on & am better for it.

There are many advocacy avenues. Some (me) mostly advocate on social, maybe blog a bit. Others speak at conferences, write books, develop content, work in advocacy, or start a non-profit (@rarelikeher, @CureVCPDisease). I’m still learning about other ways.

In terms of specific orgs that advocate, here are a few. No order, no one left off intentionally. They all do great things & we all need to work together/support each other:
@RareAdvocates @RareDiseases @GlobalGenes
@wegohealth @iPainFoundation @_OurOdyssey_

Tweet chats have been so helpful. I’ve participated in #hcldr & #patientchat. I know of some others as well, like #spooniechat, though I haven’t connected there yet. Feels like I’m forgetting some. #DareToBe is great, though not directly related to advocacy.

Podcasts are a wonderful connection. Originally, I was a listener/supporter. Little did I know, I’d become a guest (though the hosts may regret that! 😂).

Some of my faves (there are more!): @OnceUponAGene @2DDPodcast @myraredisease @findyourrare @bennessb

It doesn’t matter if you’re well known, how many followers you have, how many retweets you get. If you’re getting what you need, providing help/support for others, that matters. If you make a difference for one (yourself included), it’s enough. Keep at it. #RareAdvocacyAdvice

• • •

Missing some Tweet in this thread? You can try to force a refresh

Keep Current with Adam Johnson - DadVocate

Adam Johnson - DadVocate Profile picture

Stay in touch and get notified when new unrolls are available from this author!

Read all threads

This Thread may be Removed Anytime!


Twitter may remove this content at anytime! Save it as PDF for later use!

Try unrolling a thread yourself!

how to unroll video
  1. Follow @ThreadReaderApp to mention us!

  2. From a Twitter thread mention us with a keyword "unroll"
@threadreaderapp unroll

Practice here first or read more on our help page!

Did Thread Reader help you today?

Support us! We are indie developers!

This site is made by just two indie developers on a laptop doing marketing, support and development! Read more about the story.

Become a Premium Member ($3/month or $30/year) and get exclusive features!

Become Premium

Too expensive? Make a small donation by buying us coffee ($5) or help with server cost ($10)

Donate via Paypal Become our Patreon

Thank you for your support!

Follow Us on Twitter!