The FSHD Society announced the opening today of its FSHD Connect Classroom, the first online, full-day educational conference in the organization’s history. The online conference takes the place of FSHD Connect, the premier global educational meeting for facioscapulohumeral muscular dystrophy (FSHD), which was cancelled this year due to COVID-19. Nearly 300 individuals and families living… Read More »
FSHD Society opens its first global, online educational conference
27th Annual FSHD International Research Congress Goes Virtual
The FSHD Society announced the opening today of its 27th annual International Research Congress (IRC), which is being conducted entirely online for the first time in the organization’s history. The conference is widely seen as the premier global platform for the discussion and dissemination of state-of-the-art research on facioscapulohumeral muscular dystrophy (FSHD). A record 210 researchers,… Read More »
Landmarks and Social Media Are Turning Orange This World FSHD Day
This Saturday, June 20, 2020, the FSHD Society, the world’s largest research-focused patient organization for facioscapulohumeral muscular dystrophy (FSHD), will be joined by dozens of advocacy groups and allies around the world in celebrating the fifth annual World FSHD Day, a global 24-hour campaign to raise awareness for the disease. On World FSHD Day, the Society will… Read More »
CEO’s 2020 second quarter report
Mark Stone, the FSHD Society’s president and CEO, reported on the Society’s activities at his second quarter report to stakeholders on May 20, 2020. The webinar recording is now available (click below). He highlighted how the FSHD Society’s research initiatives, International Research Congress, FSHD Connect conference, Voice of the Patient Forum, community support, and fundraising… Read More »
The 2019 Year-End Report
This year, the FSHD Society – empowered by you – launched an aggressive plan to accelerate therapeutic development for FSHD. We brought together pharmaceutical companies, researchers, government agencies, and families in a working collaborative with the goal of delivering disease-modifying therapies by 2025. Your support, activity, perseverance, and faithfulness has allowed us to be here,… Read More »