LGMD CAB

Gene therapy is becoming a more accessible treatment for LGMD. It is a treatment that addresses the cause of LGMD, with the potential to change the disease. This can raise many questions. Some are medical, some are practical, and some deeply personal. This educational brochure has been created to make gene therapy easier to understand and to offer clear, accessible information for people living with LGMD, their families, and everyone involved in their care.

Filming has now begun for a series of videos that will help explain key aspects of gene therapy from a patient perspective. The aim is to make complex scientific information more accessible for people living with Limb-Girdle Muscular Dystrophy (LGMD), their families, caregivers and the wider LGMD community.

The LGMD CAB is pleased to announce the successful completion of the data collection phase of our cardiac care research for people living with LGMD. This marks an important milestone in our efforts to better understand the cardiac care experiences...

The LGMD Community Advisory Board (LGMD CAB) is proud to have contributed to the newly published study, Evaluation of the methodology of independent Community Advisory Boards in health products research and development: a mixed-methods cross-sectional survey study.

Today, on Donavon Decker’s birthday, we remember not only the person he was, but the strength, honesty and determination he brought to our community. Although Donavon passed away a year ago, his voice continues to resonate through his film Unfinished...

We are launching an international patient survey to capture the lived experiences of up to 140 people across multiple LGMD subtypes. The aim is to identify patterns in access to care, treatment satisfaction, and daily quality of life, and...

This film shines light on the profound impact of LGMD2D in daily life and Donavon Decker his relentless mission to push the medical industry forward. In Search of Strength is an intimate and emotionally charged portrait of Donavon Decker,...

We are proud to introduce the Limb Girdle Muscular Dystrophy Community Advisory Board (LGMD CAB) — an independent, global panel of experienced patient advocates working in partnership with industry, clinicians, and researchers. Our mission is simple: to ensure that the lived experience...

Diagnostic and Care Guidelines Workshop for LGMD R3–6 (Sarcoglycanopathies) In November 2024, members of the LGMD Community Advisory Board (LGMD CAB) participated in an international workshop dedicated to developing new diagnostic and care guidelines for LGMD R3–6 (sarcoglycanopathies). This multi-day...