National Organization for Rare Disorders (NORD) Launches the Living Rare Study
On October 21, 2024, the National Organization for Rare Disorders (NORD) launched the Living Rare Study, a comprehensive multi-year research initiative aimed at understanding the experiences of individuals living with rare diseases. This large-scale study—the first of its kind in the U.S.—will collect data on healthcare access, daily life management, emotional well-being, and financial burdens to identify critical gaps in resources and healthcare. The findings will inform policy changes and resource allocation to improve the lives of those affected by rare diseases.
