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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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Joan Mendívil
Roche (Switzerland)
Ryan Murphy
University of Alabama
Marie de la Cruz
The Institute of Conservation
SHILAP Revista de lepidopterología
Orphanet Journal of Rare Diseases
Goethe University Frankfurt
University Hospital Frankfurt
Takeda (United States)
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Mendívil et al. (Thu,) studied this question.
synapsesocial.com/papers/69d8f1e62c87b79b92d183be — DOI: https://doi.org/10.1186/s13023-021-01717-4
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