Občanské sdružení na ochranu pacientů s hereditárním angioedémem
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 favor 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 www.haei.org
HAE association supporting patients with Hereditary Angioedema
Find support and answers concerning HAE here, on these sites. Connect with people also affected by this rare condition with whom you can share thoughts, experiences and advice.
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.