Thread by @RareDiseaseDad

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

https://twitter.com/BluePhoenixArt8/status/1347961012071223297

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.

#RareAdvocacyAdvice

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. 💚

#RareAdvocacyAdvice

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.

#RareAdvocacyAdvice

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.

#RareAdvocacyAdvice

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.

#RareAdvocacyAdvice

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_

#RareAdvocacyAdvice

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.

#RareAdvocacyAdvice

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

#RareAdvocacyAdvice

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