Coalition to Cure Calpain 3 (C3) is proud to have partnered with the John Walton Muscular Dystrophy Research Centre, Sarepta Therapeutics, the Speak Foundation, and LGMD Awareness Foundation to sponsor the LGMD2A/R1 Standards of Care (SOC) Workshop. This meeting, organized by Dr. Volker Straub, Director of the John Walton Muscular Dystrophy Research Centre at Newcastle University, assembled LGMD2A/R1 clinical experts, patients, and advocates to deliberate and develop care standards for implementation in clinical practice globally. The publication of the SOC will benefit patients by educating healthcare providers about this rare form of muscular dystrophy. SOC guidelines are often a prerequisite to allow for the fair comparison of outcome measures in multi-center and international clinical trials. C3 considers them an important aspect of clinical trial readiness. We will inform the community when they are published.
