Gathering Place

No one should have to go through their FSHD journey alone.

There is strength in sharing experiences, learning from others, and knowing that you’re not the only one facing these challenges. That’s why The Gathering Place was created!

With the help of incredible volunteer leaders from all over the country—and even around the world—The Gathering Place is a collection of support groups where people with FSHD, their families, and their friends can connect. These groups bring together people who truly understand what it’s like to live with FSHD.

Each month, these groups meet online to share stories, exchange helpful ideas, and learn from one another. It’s a place where you can give and receive support, explore important topics, and gain access to educational resources that can help along the way. More than just a meeting, it’s a community where real friendships are built, and no one has to feel alone.

Find the group—or groups—that feel right for you and your journey. Then, join us each month to connect, learn, and grow together! To see all of our upcoming Gathering Place meetings, just check our calendar!

Once you join a group by submitting your RSVP for a meeting, you will not need to register for each month’s meeting. You will automatically receive monthly reminders and call-in/Zoom information. You may change your group membership at any time by following the opt-out button at the bottom of the monthly reminder email.

en English
en Englishes Spanishfr Frenchde Germanit Italiannl Dutchru Russianzh-CN Chinese (Simplified)ja Japanesehi Hindiiw Hebrewpt Portuguesear Arabicig Igboko Koreanfa Persianpa Punjabiso Somalisw Swahilitr Turkishxh Xhosayo Yorubazu Zulu