We tend to think of awareness as our attempts to make our conditions known to those who have never heard of it, but for those with rare conditions, it means so much more.

Some conditions are far better known. Nobody criticizes a breast cancer survivor for raising awareness, but the conditions that we face aren't only rare, they are generally misunderstood by our doctors, families, friends, coworkers, and peers, making life even harder than it should be. Awareness is a way of empowering us as the warriors that we are. It is our way of saying that we exist. That the struggles that we face are real, and that we will not be ashamed of sharing about it!

AWARENESS MATTERS! Keeping it real when it comes to awareness will tear down the barriers faced by the next generation! This fight has to change, so we’re aiming to change it!