On June 20th we celebrate the inaugural World FSHD Day in an effort to raise awareness. Worldwide, individuals with FSHD, their families and supporters, advocacy organizations join together to flood social media with orange slice selfies, light up landmarks in orange, and share their stories.
Project Mercury is a collaborative program led by FSHD patient advocacy organizations in partnership with experts, biopharma companies and researchers in an effort to solve barriers by increasing the number of qualified clinical trials, increasing patient engagement, and maximizing on limited resources.
Join us every three months when we come together to share updates and exchange ideas. These quarterly virtual meetings are open to all members and provide a welcoming space FSHD families, advocates, clinicians, and researches join together.
Learn more about upcoming meetings and stay informed