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YNHCH Muscular Dystrophy Program earns national recognition


On Feb. 15, representatives from Parent Project Muscular Dystrophy (PPMD) presented a plaque to staff, physicians, patients and families from YNHCH’s Muscular Dystrophy Program. The program is one of 13 nationwide named a PPMD Certified Duchenne Care Center.

The Pediatric Muscular Dystrophy Program at Yale New Haven Children’s Hospital recently became one of 13 programs nationwide – and one of just two in the Northeast – named a Certified Duchenne Care Center by Parent Project Muscular Dystrophy (PPMD).

The non-profit PPMD recognized the YNHCH program for providing standardized, comprehensive care and services for people with Duchenne muscular dystrophy, the most common fatal genetic disorder diagnosed in childhood. Affecting approximately one in every 5,000 boys, Duchenne causes muscle degeneration and weakness.

YNHCH’s Muscular Dystrophy Program provides diagnosis and multidisciplinary care for Duchenne and other muscular dystrophies, including Becker’s, Emery-Dreifuss, facioscapulohumeral and limb-girdle muscular dystrophy. The program also treats pediatric neuromuscular disorders, including spinal muscular atrophy, myotonia congenita, myotonic dystrophy and Charcot Marie Tooth disease. Brian Smith, MD, and Cristian Ionita, MD, are co-directors of the program, located at YNHCH’s Pediatric Specialty Center at Long Wharf in New Haven.

“We are excited and proud to be part of such a select group of Duchenne Care Centers,” Dr. Ionita said. “This is a recognition of the exceptional care that patients with Duchenne muscular dystrophy receive at our institution. We are looking forward to a fruitful collaboration with PPMD.”

In 2014, PPMD launched the Certified Duchenne Care Center Program to ensure centers maintain the highest standards in clinical and sub-specialty services, rapidly apply new, evidence-based knowledge and comply with Centers for Disease Control and Prevention clinical care standards.