Clinical Trials Resources

LGMD Awareness Day Toolkit

The LGMD Awareness Foundation is on a mission to shine a global spotlight on limb-girdle muscular dystrophy (LGMD) and champion the cause for improved access to diagnosis, care, and treatment for those living with this condition. As we celebrate a decade of progress, we will be rolling out an Awareness Day Toolkit in spring of 2024, designed to empower and engage our community in advocacy like never before.

LGMD Awareness Day Toolkit

Spotlights

Explore our ‘Spotlights’ section, where we shine a light on the inspiring stories and invaluable contributions of individuals with LGMD, their dedicated caregivers, supporting organizations, and the clinicians who support them.

Navigating the world of clinical trials can be complex, especially for those diagnosed with limb-girdle muscular dystrophy (LGMD). The “Clinical Trials Resources” page is designed to simplify this journey, offering a wealth of information and resources tailored specifically for LGMD patients. Whether you’re considering participating in a trial or simply seeking to understand the latest research developments, this guide provides clarity and direction, ensuring you’re well-informed every step of the way.

LGMD Clinical Trials & Natural History Studies

Clinical Trials and Natural History Studies are vital for advancing research to help find a treatment and cure for LGMD.

ClinicalTrials.gov – This is a searchable registry and results database of federally and privately supported clinical trials conducted in the United States and around the world.
Biotech and Pharmaceutical Companies

Rare Research Map

Following the 2022 Rare Drug Development Symposium, Global Genes released the Rare Disease Roadmap. This toolkit was designed to help advocates, individuals, families, and organizations better understand some of the potential routes to treatment and some of the key concepts that are part of these processes to work with researchers and industry partners throughout the drug development process.

Rare Research Roadmap

Checklist for Assessing the Legitimacy of Any Proposed LGMD Treatment

Patients can empower themselves by investigating whether or not a treatment has been published and proven to be safe and effective. For the health & safety of the LGMD patient, it is extremely important to determine whether a treatment is legitimate!