The pressing needs of HAE patients in Europe – Policy debate

Their condition is so little known, patients who live with hereditary angioedema (HAE) endure diagnostic delays characterized by misdiagnosis leading to unnecessary surgeries, and the threat of fatal suffocation due to unpredictable swelling attacks, according to experts who participated in a policy discussion attended by members of the European Parliament.

The statistics told a striking story at a recent European Parliament policy discussion, sponsored by CSL Behring, about the plight of European patients who live with the rare disease hereditary angioedema (HAE).

• Only 4% of primary care physicians and 12% of emergency room doctors have what patients consider a "very good" level of knowledge about HAE.
• HAE patients are often misdiagnosed with conditions such as appendicitis and receive unnecessary surgeries.
• Getting correctly diagnosed with HAE can take on average eight years or sometimes longer.
• Without diagnosis and treatment, swelling attacks that affect the mouth and throat are fatal 30% of the time.