By Selina Lai, Pacific Northwest Chapter Director Our attendance at the Denver Patient Connect Conference last June inspired us to plan a summer trip to Europe to participate in the […]
By Ria de Haas, FSHD Europe FSHD Europe proudly hosted the first edition of FSHD Connect Europe, an event that marked a significant milestone for the European FSHD community. The […]
By Jenny Gast, Director of Chapter Programs As the FSHD Society continues to grow, we’re reimagining how we connect our community across chapters. On June 25, we piloted a new […]
World FSHD Day, a global movement to raise awareness of FSHD, occurs on June 20. From orange slice selfies and proclamations to lit up buildings, World FSHD Day was a […]
by Erin Saxon, FSHD Society A few months ago, I began an exciting project: capturing the stories of the early members of the FSHD Society. Since then, I’ve interviewed several […]
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