Accélérateur thérapeutique

Driving Breakthroughs for FSHD Treatments

The FSHD Therapeutic Accelerator, spearheaded by the FSHD Society, is a comprehensive initiative designed to fast-track the development of effective treatments for FSHD. This groundbreaking initiative is bringing together researchers, regulators, pharmaceutical companies, clinicians, industry partners, and patients to tackle the unique challenges of FSHD drug development. Through focused collaboration, we’re turning hope into action—creating tools, driving research, and laying the groundwork to ensure therapies reach those who need them most. This effort is as ambitious as putting a man on the moon, and we’re positioned to make it happen.

Why the FSHD Society Leads This Effort

The FSHD Society is uniquely positioned to drive this monumental mission forward. Here’s why:

  • Unmatched Expertise

    We’ve built a global network of scientists, clinicians, and industry leaders who are focused on finding solutions for FSHD.

  • Patient-Centered Approach and Data

    Our patient network is vast and our partnerships prioritize patients’ voices and experiences, ensuring that therapies address real-world needs.

  • Proven Track Record

    From funding research grants to creating clinical trial networks, we’ve laid the foundation for success.

Together with our partners, we’re leveraging every resource to accelerate drug development and bring life-changing therapies closer to reality.

How It Works: The Three Pillars of Progress

1. Scientific Research and Collaboration

We unite experts from across the globe to advance targeted research and share breakthroughs. Key initiatives include:

  • Industry Collaborative: Solving critical challenges in drug development through shared patient data and smarter clinical trials.
  • International Research Congress: Bringing together leading scientists annually to exchange ideas and accelerate progress.
  • Research Grants: Funding targeted research topics that address key questions in FSHD science.

2. Clinical Research Infrastructure

We provide tools and platforms to fast-track clinical trials and ensure researchers have what they need to succeed:

  • Clinical Trial Research Network: A global network of clinical sites offering expert care and conducting cutting-edge trials.
  • National Registry and FOCUS Database: Compilation of patient data from completed trials to fuel new discoveries.
  • FSHD Patient Biospecimens: Collection and validation of patient biospecimens for translational research.
  • BetterLife FSHD: Empowering individuals with customized resources and tools like symptom tracking, clinical trial matching, and secure data sharing.
  • Global FSHD Innovation Hub: A wholly owned subsidiary of the FSHD Society, contracted by biopharma companies to speed up their product development lifecycle.

3. Advocacy and Patient Access

We ensure therapies succeed in trials and reach patients once approved:

  • FSHD Navigator: Connecting individuals with clinical trials, support groups, and resources for managing their journey.
  • FSHD 360 Conferences: Offering education, empowerment, and updates on research at events across North America.
  • FSHD Connect: The world’s largest networking event for individuals living with FSHD, researchers, and clinicians.
  • Project Mercury: A groundbreaking initiative managed by the FSHD Society that develops tools to address unique challenges associated with drug development.

Why This Matters: The Moonshot for FSHD

Developing effective treatments for FSHD isn’t just a goal—it’s a race against time for thousands of people living with this condition. The Therapeutic Accelerator program is our bold mission to transform lives through science, collaboration, and advocacy.

Join Us in Making History

Whether you’re a patient, researcher, clinician, or advocate, there’s a role for you in this transformative effort. Explore ways to contribute: