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Featured and Patient Stories

Jaishri Blakeley, left, and Lori Jordan say their work with patients and families is equal parts education and medical management

Neurofibromatosis, a Common but Unpredictable Inherited Disorder

Neurofibromatosis badly needs a PR campaign. Ask most people to name a disease that’s passed from parent to child and their response is likely to be cystic fibrosis, muscular dystrophy, sickle cell anemia, Tay-Sachs disease—any or all of these pop to the front of the mind.

Outgoing teen Meredith Zanelotti has been able to remain active through management of her low muscle tone and underlying genetic disorder at the Johns Hopkins Hypotonia Center

Treating Hypotonia

Many patients with low muscle tone go undiagnosed and untreated for months or years, leaving parents feeling lost in a system with no real answers.

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