Where do I find other people with hereditary angioedema?

Support groups can put you in contact with other people or families that have hereditary angioedema (HAE). Support groups for HAE include the U.S. Hereditary Angioedema Association, HAE Canada, and HAEi – International Patient Organization for C1 Inhibitor Deficiencies.

There are also online communities for rare disorders such as RareConnect, RareShare, or Inspire, which allow individuals and parents to share experiences and advice about dealing with rare disorders.

Other Questions About Hereditary Angioedema

• Will my child outgrow hereditary angioedema?
• Who else in my family should I test for hereditary angioedema?
• Where do I find other people with hereditary angioedema?
• Where can I get financial help for hereditary angioedema?
• When do symptoms start in hereditary angioedema?