Facioscapulohumeral dystrophy Advocacy Hub | UniteRare

At a Glance

Live from database

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19Recruiting trials

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11Specialists

Regulatory Watchboard

10 events

Aug 2026Phase 2 Study Evaluating Apitegromab for the Treatment of FSHD

Scholar Rock, Inc. — PHASE2

TrialNOT YET RECRUITING

Dec 2025Safety and Preliminary Efficacy of ULSC in Facioscapulohumeral Muscular Dystrophy (FSHD)

Restem, LLC. — PHASE1

TrialRECRUITING

Jun 2025A Study to Evaluate Del-brax (Also Referred to as AOC 1020) in Participants With FSHD

Avidity Biosciences, Inc. — PHASE3

TrialRECRUITING

May 2025A First-in-human Study of EPI-321 in Facioscapulohumeral Muscular Dystrophy

Epicrispr Biotechnologies, Inc. — PHASE1, PHASE2

TrialRECRUITING

Feb 2025Testing a Tailored Home Exercise Program to Reduce Pain and Fatigue in Patients with FSHD.

Radboud University Medical Center — NA

TrialNOT YET RECRUITING

Nov 2024Imaging and Gait Analysis in FSHD Patients

Fondazione Policlinico Universitario Agostino Gemelli IRCCS

TrialENROLLING BY INVITATION

Sep 2024Ten Year Follow-up in FSHD: the FOCUS 3 Study

Radboud University Medical Center

TrialRECRUITING

Aug 2024BetterLife FSHD: A Patient-driven Health and Research Platform

FSHD Society

TrialRECRUITING

Jul 2024Phase 2 Open-label Extension Study of AOC 1020 in Participants with Facioscapulohumeral Muscular Dystrophy (FSHD)

Avidity Biosciences, Inc. — PHASE2

TrialENROLLING BY INVITATION

Apr 2024Walking ANalysis Interest in Persons wiTh facioscapulohumEral Muscular Dystrophies

Centre Hospitalier Universitaire Dijon — NA

TrialRECRUITING

Data from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.

Financial Assistance

FINANCIAL LANDSCAPE SUMMARY

Total programs

No financial assistance programs currently listed for Facioscapulohumeral dystrophy.
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Clinical Trial Landscape

19 active trials

1Phase 3

3Phase 2

1Phase 1

4N/A

8Unknown

2PHASE1, PHASE2

19Total recruiting

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Recent News & Research

No recent news articles indexed yet for Facioscapulohumeral dystrophy.
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Browse all Facioscapulohumeral dystrophy news →

Specialist Network

Top 6 by expertise

Chiara Marini-Bettolo, MD, PhD

Newcastle University

📍 Newcastle upon Tyne

Score 83 trials

Jeffrey Statland, MD, MD

University of Kansas Medical Center

📍 KANSAS CITY, KS

Score 27 trials

Jacques MERCIER

CHRU de Montpellier

Score 01 trial

Chad R Heatwole, MD

University of Rochester

📍 ROCHESTER, NY

Score 01 trial

Hamid Gourabi

President of Royan Institute

Score 07 trials

John W Day

Stanford University, School of Medicine, Neuromuscular Research Division

Score 01 trial

View all Facioscapulohumeral dystrophy specialists →

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