OUR VISION
The vision of OPTIMIZE DMD Consortium is to create a learning health network of expert clinicians and scientists who will work effectively to advance the standard of care, research, education and advocacy and thereby move the dial on contemporary “endocrine and bone” clinical care and outcomes facing individuals and families living with Duchenne muscular dystrophy (DMD).
Osteoporosis and fractures are common complications in individuals with Duchenne Muscular Dystrophy (DMD) due to muscle weakness, immobility, and long-term glucocorticoid treatment. Our working group consists of endocrinologists and neuromuscular specialists with experience caring for individuals with DMD. Our mission is to raise awareness and improve the standard of care for the prevention, screening, and treatment of osteoporosis. This initiative seeks to prevent complications from osteoporosis, including early loss of ambulation and fat embolism syndrome, through education for patients and healthcare professionals, as well as research.
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Parent Project Muscular Dystrophy fights to end Duchenne. We accelerate research, raise our voices to impact policy, demand optimal care for every single family, and strive to ensure access to approved therapies.
PPMD’s advocacy efforts are focused on advancing care and treatments for Duchenne by leveraging federal resources, building partnerships, and creating regulatory procedures and infrastructure. PPMD empowers advocates with the tools and information to engage with Congressional representatives to foster Duchenne champions within Congress and to advance legislation and regulatory policies, ensuring that Duchenne priorities are reflected across all government agencies.
