Chiesi Focuses on Patient-Centered Care in Fabry Disease
April 24, 2024
Chiesi Global Rare Diseases has published survey results in the Orphanet Journal of Rare Diseases that underscore the persistent awareness gap and unique struggles of rare disease patients, specifically those with Fabry disease. Giacomo Chiesi emphasizes the importance of understanding the disease from a patient’s viewpoint to enhance healthcare delivery. The survey, involving 280 adult patients mainly from the U.S. and Canada, aimed to shed light on their daily challenges, disease monitoring patterns, and treatment impacts on quality of life. The findings revealed common symptoms like fatigue, pain, and hearing issues, with many experiencing symptom exacerbation between treatments. Less than half reported these flare-ups to their doctors, a concerning trend that underscores the need for improved disease management and monitoring. The survey illustrates a disconnect between standard care and patient experiences, guiding Chiesi’s mission to provide equal access to innovative therapies for rare diseases.
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[Source: PR Newswire, April 24th, 2024]
