About us
Welcome to the web pages of the Association of patients with immunodeficiency HAE/AAE, which was established in December 2009 as a nonprofit organization of patients with Hereditary Angioedema (HAE) and Acquired Angioedema (AAE) caused by C1 inhibitor deficiency.
Hereditary Angioedema (HAE) is a rare disorder that results from a genetic deficiency of the blood-based protein C1 inhibitor. HAE patients experience attacks of edema (swelling) in the hands, face, feet, abdomen, and/or throat (airway).
Swelling that involves the throat can close the airway and cause death by suffocation. Abdominal attacks often result in severe pain and intense vomiting serious enough to require hospitalization for pain management and IV fluids.
Through this association patients may gain information on how to live with this condition and about possible means of treatment, as well as support in Doctor-Patient relations. This association also advocates the accessibility of treatment for HAE/AAE patients and offers the possibility of contact with other patients for exchange of advice and experiences and for psychological support.
The information, including opinions and recommendations, contained on these web pages is for educational purposes only. Such information is not intended to be a substitute for professional medical advice, diagnosis or treatment. No one should act upon any information provided in this website without first seeking medical advice from a qualified medical physician. Information derived from the internet or emails, no matter how accurate or relevant is no substitute for competent medical care.
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