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A Harris Poll of Hereditary Angioedema Patients

A recent survey shed light on how this rare disease affects daily life and what they value most.


More and more, patients are regarded as experts in their disease. They live it every day, after all.

A recent Harris Poll, commissioned by CSL Behring, asked patients who have hereditary angioedema to assess how the unpredictable condition affects them. In the survey, patients also gave their thoughts on treating the condition, which causes dangerous swelling episodes.

Here are some highlights from the survey, which also included responses from physicians:

More than 40% of patients said the condition had a significant impact on daily activities, but doctors were much less likely to say the same. More than 75% of patients said they worry every day about having an HAE attack. Both patients (94%) and physicians (91%) agree that a reduction in the number of attacks is the leading driver when making treatment decisions, followed closely by the importance of safety. The vast majority of patients (94%) said it’s important their preventive therapy specifically corrects C1 esterase inhibitor (C1-INH) deficiency.

Learn more in the infographic below.

Infographic that says only 35% of HAE patients say their attacks are well controlled