pediatric clinical trials

Newborn Screening Awareness Month: Advances Toward a Federalized Screening Program

Newborn Screening Awareness Month: Advances Toward a Federalized Screening Program

September is Newborn Screening Awareness Month. Since the 1960s, every infant born in America receives a heel prick within the first 48 hours of life. The dried blood is then tested for various genetic, endocrine, and metabolic disorders. When the test detects a specific disease, families are educated, and a life-changing treatment plan is quickly …

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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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Voice of the Patient Research

View the results of our recent research to explore how effective patient support strategies can reduce barriers, increase retention, and improve outcomes in rare disease clinical trials in our latest eBook.

Voice of the patient