caret icon Back to all discussions

What does advocacy mean to you?

Advocacy can take many different forms - raising awareness in your local community, sharing on social media, and taking legislative action are just a few examples. Are you involved or want to get involved in advocacy for your rare disease? Tell us what you're up to!

Looking to learn more about patient advocacy? Check out this Patient Leader Certification Program:

  1. Lot of times, I have to teach or giver information to my doctors, as they have have never heard of my bone dysplasia. I have to keep sending my chart messages to tell them when I am having more issues that I am not able to handle. Been thinking about bringing more awareness, at the same time the medical field is just changing so much that it is so hard.

    1. , it's frustrating, isn't it? When my son was younger, he started exhibiting symptoms and the doctor was stumped. I ended up educating him, but you really want to feel like you're consulting with someone knowledgeable and not have to teach them about the disorder! How are things now, has your doctor tried to bring himself up to date? - Warmly, Donna (team member)

Please read our rules before posting.