New! Rare Disease Caregiver Respite Program

The National Organization for Rare Disorders (NORD)'s financial-assistance Respite Program is designed for caregivers (parent, spouse, family member, or significant other) of a child or adult with a documented diagnosis of a rare disorder. The Respite Program provides financial assistance to enable the caregiver...

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State of Washington Makes Progress in Newborn Screening for MPS I and Pompe Disease

On August 9, 2017 the Washington State Board of Health unanimously passed the addition of Pompe disease and mucopolysaccharidosis type I (MPS I) to their state’s newborn screening panel. The Board of Health is the policy body charged with making recommendations to the State...

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