Partnering for Patients Forum 2021

The Road Ahead for Improving Access to Testing and Treatment for Rare Diseases

Genetic testing is critical to the diagnosis of many rare conditions. Genetic counselors play a vital role in helping patients and caregivers understand test results and providing them with the information needed to determine the appropriate next steps. Yet significant barriers remain in access to genetic tests and genetic counseling. This discussion will focus on policies to address these barriers, the key considerations in implementing them—including potential unintended consequences of interventions—and the areas where additional progress is most needed.

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