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Clinical characteristics and burden of illness in patients with hereditary angioedema: findings from a multinational patient survey.

Joan MenauthorilRyan MurphyMarie de la CruzEllen JanssenHenrik Balle BoysenGagan JainEmel Aygören-PürsünIshan HirjiGiovanna Devercelli
Published in: Orphanet journal of rare diseases (2021)
This survey study of a broad international sample of patients with HAE showed that despite the availability of on-demand treatment and long-term prophylaxis for the prevention of attacks, patients across a wide geographical area continue to have high disease activity, likely due to restrictions in the availability of medications or incorrect use. Subsequently, significant disease burden, including impaired quality of life and mental health and decreased productivity, was evident. Increased patient education and access to newer, more effective therapies are needed.
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