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Self-help groups

Self-help groups – You are not alone

Bradykinin-mediated angioedema, including hereditary angioedema (HAE), are among the less commonly encountered disorders in humans. Nevertheless, the burden of these diseases is great and is often compounded by the fact they are not widely known or understood. Many patients, therefore, benefit from contact with other persons who are affected by these disorders. Exchanging experiences and tips can increase your confidence in dealing with your illness and help you overcome any lingering fears.

Self-help groups act as sources of information and as a forum for exchanging experiences. In German-speaking countries, you can obtain more information by visiting the Websites of the German HAE Association, the HAE Association of Switzerland or HAE Austria. The Websites of these organisations provide patients and family members with important contact information as well as a variety of information sources aimed at helping you understand these disorders, including their diagnosis and treatment options. The German HAE Association organises regular patient meetings on a regional and national level in Germany.

The webpages of the respective country organizations provide important contact information as well as a variety of information regarding HAE in general, as well as methods for diagnosing and treating the disease. An international patient organization for C1 inhibitor deficiencies – HAEI – is established to promote co-operation, co-ordination and information sharing between HAE specialists and national HAE patient associations (see www.haei.org).