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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. 💚

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