-
What’s your story?
Good morning friends!
Do any of you want to get more involved with patient advocacy?
If so, I have an opportunity for you!
If not, that’s okay!
Would you be interested in sharing your LEMS story in hopes of helping others?
Sharing our story is one of the most powerful tools we have.
The more people we share our story/diagnosis with, the more people who will know about LEMS!
Many of you know, but if you don’t, sharing our stories is something I’m really passionate about!
I want to tell my story to the whole world! Maybe you aren’t ready to, and that’s okay too.
This month is Rare Disease Awareness Month, and on the 28th we will be celebrating Rare Disease Day!
EveryLife, A foundation for rare diseases and advocacy has asked us to share our stories with them! I just shared mine this morning!
If you would like, I encourage you to share your story with them! It’s a very easy process of submitting an online survey
What happens after you share?
According to Everylife, “Your story, in part or full, may be shared with your members of Congress, used for other ongoing advocacy efforts related to rare disease, and/or used in our publications, presentations, website, or social media which advance our mission. For your privacy, only your first name, last initial, city, and state will be shared with your story.”
-
0 Replies
Sorry, there were no replies found.
Log in to reply.