PPMD knows that keeping track of all elements of your/your child’s care can be overwhelming and confusing. For this reason, we have created a series of care checklists for families to track and understand recommended care relative to each stage of disease progression.
Every single person living with Duchenne deserves the best care possible. We at PPMD strongly recommend coordinated multidisciplinary care to manage every aspect of Duchenne. In partnership with the Centers for Disease Control and Prevention (CDC), PPMD advocated for and participated in the development and updates of standards of care for Duchenne. These Duchenne Care Guidelines were published in Lancet Neurology in 2018.
These checklists are meant to be a resource to help organize and navigate the many moving parts of Duchenne care.
- Download care checklist for early ambulatory/childhood (PDF)
- Download care checklist for late ambulatory (PDF)
- Download care checklist for early non-ambulatory (PDF)
- Download care checklist for late non-ambulatory (PDF)
Finding the Best Care Nearby
It is also important that families know who is in charge of delivering the care they need and understand what centers are providing optimal, standardized care and services in agreement with the Duchenne Care Guidelines. PPMD’s Certified Duchenne Care Center (CDCC) Program helps to ensure that centers have met the requirements for and agree to provide this level of care.
Learn More About Navigating Care
Join us on our Facebook page this Friday at 12:00 PM EDT for another Family Friday discussion around building relationships with your neuromuscular care team. This is incredibly important to maintain consistency in care as well as ensure lines of communication are open. We will be joined by two parents with sons living with Duchenne, as well as an adult living with Duchenne to hear their experiences in developing relationships with their care providers.Join PPMD’s Next Family Friday on Facebook Live >