Understanding Gene Therapy
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.
LGMD CAB Proud to Contribute to Published Study on Independent Community Advisory Boards in Health Product Research
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.
Workshop for LGMD R3–6
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...
“Stronger together: patients, researchers, and industry working as one community.”
Donavon Decker
Director Patient Advocacy“The CAB’s feedback turned potential challenges into practical solutions.”