Nearly 1 in 10 Americans has a rare disease, affecting around 30 million people across 7,000+ conditions. Definitive Healthcare’s 2023 survey of 145 healthcare providers highlighted key challenges in rare disease care: delays in diagnosis (44.1%), lack of physician education (30.3%), specialist shortages (29.0%), treatment access issues (28.3%), and low symptom awareness (27.6%). Providers emphasized that collaboration with rare disease centers (50.3%) and enhanced data sharing (33.8%) could improve care today. Looking ahead, increasing physician education (42.8%), fostering collaboration (40.0%), and new therapeutic technologies (37.2%) are seen as critical for better rare disease management.

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