HAE & Family

“My son also has HAE. He hasn't had his first attack yet, but when he does it will be very different than mine because we have the HAE community to walk with us.”

Liz — Diagnosed with HAE in 2013

Discover how HAE runs in families

Hereditary angioedema (HAE) is usually passed down through families, but that's not always the case. Some people develop HAE because of a spontaneous change in their genetic code, so it can't always be traced to a relative.

A pie chart on family history. 75% of patients inherited the HAE gene. 25% have no family history of HAE.

If one parent has HAE, each child will have a 50% risk of inheriting the condition. If a child does not inherit the disease from his or her parents, he or she will not pass it on to future generations.

Chart describing how HAE is inherited.  If one parent has HAE, each child will have a 50% risk of inheriting the condition. If a child does not inherit the disease from his or her parents, he or she will not pass it on to future generations.

In a survey, HAE patients had an average of two immediate and two extended family members who had also been diagnosed with HAE.* This means that as a diagnosed patient, you may have family members who also have HAE.

Encourage your family to talk to their doctor about getting tested for HAE

Because HAE is rare, some doctors may not be familiar with the condition. You can help empower your family members to discuss the condition with their doctors and encourage them to get tested. If a family member is interested in finding a doctor who knows about HAE, let them know there are experts who can help diagnose and treat HAE.

*In a global survey of 313 patients.