pediatric clinical trials

rare disease parents and family

Caring for Rare: Navigating a Complex Journey

A rare disease diagnosis poses more questions than answers for parents learning that their child has a severe and often untreatable condition. According to the National Organization for Rare Disorders (NORD), there are over 7,000 known rare diseases, with 90% of these having no effective treatment. Obtaining a diagnosis is only the first step and …

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newborn screening awareness month clinical trial

Newborn Screening Awareness Month: Creating a Federalized Screening Program

September is Newborn Screening Awareness Month Newborn Screening is a modern medical practice many believe to be the most successful public health program in United States history. Since the 1960s, every infant born in America receives a heel prick within the first 48 hours of life. The resulting dried blood is then tested for a …

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