A Family Champion is a hereditary angioedema (HAE) patient who advocates for the family's health - empowering their relatives to learn more about HAE and to get tested for it.
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 undiagnosed family members who also have HAE.
HAE is a rare genetic disease. About 75% of people with HAE have inherited the disease, and only about 25% have a spontaneous genetic mutation that causes it. If one parent has it, each child will have a 50% risk of inheriting the condition.
We understand that talking about any health matter with others, especially a hereditary condition, isn’t always easy. That’s why becoming a Family Champion can be so important.
Because HAE is rare, some doctors may not be as familiar with the condition as you are. As a Family Champion, you can help empower your family members to discuss the condition with their doctors and encourage them to get tested.
You’ll have access to information, tools and resources that can help you start important conversations with your family — conversations that can help inspire them to take action.
*In a global survey of 313 patients.
The discussion guide has everything you need to start an HAE conversation, including information on how HAE is passed down, ways in which family members can get tested and suggestions on how to start this important conversation.Send Your Loved One a Letter
Download a letter to your relatives that explains what HAE is and encourages them to get tested.