Español de MéxicoAdvancing FSHD Research and Clinical Care
Join the movement to improve outcomes for people with facioscapulohumeral muscular dystrophy (FSHD). Whether you're a clinician, researcher, genetic counselor, physical therapist, or other healthcare provider, the FSHD Society is your partner in driving evidence-based care and accelerating research.
The FSHD Society offers a comprehensive suite of resources designed to keep you at the forefront of FSHD care and discovery. From clinical guidelines and diagnostic tools to continuing education and patient engagement programs—everything you need is one click away.
Access the latest Standard of Care guidelines and other essential materials to support diagnosis, monitoring, and multidisciplinary care for people living with FSHD.
Advance your knowledge through our FSHD Masterclass, on-demand modules, and live events designed specifically for healthcare professionals.
Stay informed on the evolving FSHD therapeutic landscape. Learn about active clinical trials, drug development pipelines, and how to prepare for emerging treatments.
Get up to speed on best practices for diagnosing FSHD, including testing protocols, counseling considerations, and lab recommendations
Encourage patients to participate in BetterLife, our patient-reported outcomes platform that helps track symptoms, contributes real-world data to research, and guides self-management.
Help your patients take control of their care journey. Share trusted print, digital, and in-person resources to connect them with expert information and peer support.
Join our national Care Connector Network to make your expertise visible to patients and colleagues. Keep your practice information up to date so we can refer individuals with FSHD directly to you.
Visit Care Connector Care Connector Interest Form
We’re happy to share your study recruitment materials with our community. Please use the below form to submit all relevant details and desired timeline.
FOCUS, el Sistema Unificado Colaborativo Abierto sobre la FSHD, ofrece acceso a un almacén centralizado de datos clínicos sobre la FSHD que incluye:
FOCUS permite a los investigadores aprender de estudios anteriores para diseñar mejores ensayos, reducir los plazos de desarrollo y, en última instancia, ofrecer a los pacientes terapias que cambian la vida más rápidamente. La iniciativa comienza con una generosa contribución de datos por parte de Fulcrum Therapeutics, cuyos datos del ensayo con losmapimod seguirán sirviendo de base para futuras investigaciones, garantizando que los esfuerzos y la participación de los pacientes sigan impulsando los descubrimientos científicos.
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