Cure CMD’s “Building Momentum Through Congenital Muscular Dystrophy Stakeholder Participation” will engage stakeholders of all types, including patients and their families and/or caregivers, clinicians, researchers, health payers, policy makers, and the industry (including pharmaceutical companies) over the course of two years. Through online networks, social media conversations, four scientific research meetings, and a final conference that invites all stakeholders to build a community of increased communication and collaboration, the organization will spark dialogue among patients and experts, increase public awareness, and accelerate the community toward the clinical trials necessary to identify effective treatments and cures. Through this project, Cure CMD will also be creating a replicable, step-by-step, momentum-building process, which other rare diseases may implement in their pursuit of cures.
Project collaborators: the congenital muscular dystrophy community of scientists, clinicians, affected individuals and their families.
Project Resource: Conference Agenda
Project Resource: 2017 Workshop Summary
Project Resource: One, Three and Five Year Priorities for CMD
^Anne Rutkowski, MD, was the original project lead.