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Several of our patients are featured in this article on rare congenital myopathies from the spring 2009 issue of Vector, a Boston Children’s Hospital publication on research. 

2 children with rare disease who live 300 miles apart finally meet for special playdate

Boston Children’s Hospital patients are featured on the television program “Inside Edition.” The 3-year-olds share the same rare disease, spastic paraplegia, SPG47, and are the only two confirmed case in the United States.  Boston Children’s Basil Darras, MD, who treats the girls, provides expert insight on the rare condition.  

Boston Children’s is so much more than a hospital—it’s a community of researchers, clinicians, administrators, support staff, innovators, teachers, patients and families, all working together to make the impossible possible. ”
- Sandra L. Fenwick, President and CEO

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