Pour les cliniciens

Advancing 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.

Where to Start?

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.

Soins cliniques de la FSHD

Access the latest Standard of Care guidelines and other essential materials to support diagnosis, monitoring, and multidisciplinary care for people living with FSHD.

Clinical Overview & Information

Formation continue

Advance your knowledge through our FSHD Masterclass, on-demand modules, and live events designed specifically for healthcare professionals.

Research & Clinical Trial Updates

Stay informed on the evolving FSHD therapeutic landscape. Learn about active clinical trials, drug development pipelines, and how to prepare for emerging treatments.

Genetic Testing Guidance

Get up to speed on best practices for diagnosing FSHD, including testing protocols, counseling considerations, and lab recommendations

BetterLife FSHD

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.

Patient Education & Support

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.

Care Connector Directory

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

Care Connector

Share Your Study

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.

Submit your study information

Access comprehensive clinical data

FOCUS, le système ouvert de collaboration unifié de la FSHD, offre un accès à un entrepôt centralisé de données cliniques de la FSHD, y compris :

Analyses du phénotype des patients
Données de contrôle historiques
Aperçu de l'optimisation des points finaux
Modèles de résultats du traitement

FOCUS permet aux chercheurs de tirer des enseignements des études précédentes afin de concevoir de meilleurs essais, de réduire les délais de développement et, en fin de compte, de mettre plus rapidement à la disposition des patients des thérapies qui changent leur vie. L'initiative commence par une généreuse contribution de Fulcrum Therapeutics, dont les données de l'essai sur le losmapimod continueront d'éclairer les recherches futures, garantissant que les efforts et la participation des patients continuent de faire progresser la découverte scientifique.

Access FOCUS