Who We Are
The Limb Girdle Muscular Dystrophy Community Advisory Board (LGMD CAB) is an independent, international group of experienced patient advocates working alongside industry, researchers, and clinicians. We ensure that the lived experience of people with LGMD is represented in every stage of therapy and trial development — making research more relevant, feasible, and impactful.

Our Mission
We bridge the gap between science and real life. Our goal is to help shape clinical studies and treatment strategies that truly reflect the needs and priorities of those living with LGMD. By sharing practical insight and lived experience, we support the creation of therapies that are both effective and meaningful.

What We Do
The LGMD CAB provides:
• Study Design Feedback – improving feasibility and participant experience.
• Community Insights – translating patient perspectives into actionable guidance.
• Ethical & Practical Support – ensuring transparent and inclusive engagement.
• Long-Term Collaboration – building trusted partnerships across sectors.
• Our input helps partners anticipate challenges, improve recruitment and deliver stronger outcomes for all involved.

Global Reach
Our members represent multiple regions and healthcare systems worldwide, ensuring a balanced, international perspective in every collaboration.

Our Background
The LGMD CAB was established independed and has now the support of EURORDIS-Rare Diseases Europe and TREAT-NMD, as part of a global initiative to strengthen collaboration between patient communities and research stakeholders. We operate independently, following recognised standards of transparency, ethics, and engagement to bring authentic patient perspectives into LGMD research and development.

Global Perspective
With CAB members located around the world, we bring together diverse expertise and experiences. This global network allows us to provide a broader perspective — ensuring that every insight reflects not just one region, but the collective voice of our international community.

How We Collaborate
The LGMD CAB partners with organisations developing therapies and research in Limb Girdle Muscular Dystrophy. We provide independent, experience-based feedback through advisory meetings, workshops, and document reviews.

Our goal is to help make studies more relevant, feasible, and patient-centred. By engaging with us early, partners gain valuable insight that improves trial design, strengthens community trust, and enhances the overall quality and impact of their research.

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