HAE association supporting patients with Hereditary Angioedema
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People suffering from HAE have a low level of an important protein in their blood. The protein is called C1-INH (pronounced C1 inhibitor, which is short for C1 esterase inhibitor). C1-INH regulates and “turns off” various reactions in the body. A low level or decreased function of C1-INH is thought to be the major reason for recurrent, often severe or even life-threatening swelling (angioedema) in different parts of the body in people with HAE.
Goals of the association:
  • transmission of scientific information concerning Hereditary Angioedema and potential treatment
  • providing information to the general public
  • improvement of Doctor-Patient contact and discussions
  • advocacy in favour of treatment accessibility
  • cooperation with international associations of patients with Hereditary Angioedema
The goal of this association is supporting patients with Hereditary Angioedema, a congenital primary immunodeficiency with familiar occurrences, and to ensure adequate therapy which is, at this time, provided only through a “Specific medical program”, monitored by the Czech Ministry of Health.
Our association is a member of the international patients’ association HAEI – International Patient Organization for C1 inhibitor Deficiencies