Imperatives for DUCHENNE MD: a Simplified Guide to Comprehensive Care for Duchenne Muscular Dystrophy

Conclusion “Imperatives for Duchenne MD” is a very focused and brief snapshot of the essential components of comprehensive DMD care as described in the CDC care considerations. This information is meant for health care providers, but can also be used by patients and parent advocating for comprehensive care for themselves or their children. The document has so far been translated into 18 languages by patient organizations and professional volunteers around the world through the TREAT-NMD Alliance. More detailed information for each area of care and the care required for each stage of Duchenne, as well as the complete publication of the care guidelines are available both online and in print5,7. These publications and the Family Friendly version of the care guidelines are available at the TREAT-NMD website as well. Supporting Organizations Parent Project Muscular Dystrophy (PPMD) Parent Project Muscular Dystrophy (PPMD, www.parentprojectmd.org)9 is the largest nonprofit organization in the United States focused entirely on Duchenne. Started in 1994 by Pat Furlong, PPMD takes a comprehensive approach in the fight against Duchenne—funding research, raising awareness, promoting advocacy, connecting the community, and broadening treatment options. PPMD’s care objectives are to identify gaps in care for people with Duchenne and work toward solutions, and to work with clinicians and other health care professionals across the globe to ensure all Duchenne patien...
Source: PLOS Currents Muscular Dystrophy - Category: Neurology Authors: Source Type: research