Our look is new. Our purpose is the same. Learn more about our brand evolution.
FSHD can feel overwhelming, but you don’t have to face it alone. Connecting with others can make a world of difference, whether you are looking for advice, information, or a place where people understand what you’re going through.
Our online communities offer a space to share experiences, learn, and build meaningful connections. No matter where you are on your journey, there’s a place for you.
The Gathering Place is where people with FSHD, families, and caregivers come together to share experiences, exchange advice, and build community. Our targeted support groups meet virtually every month.
From wellness discussions to fitness to young adult networking and more, there’s a group for you.
Stay informed, get inspired, and engage with the FSHD community across all your favorite platforms. Our official social media channels are where you’ll find the latest news, real stories, research updates, and ways to take action.
