The annual hae day :-) aims to raise awareness worldwide.
On 16 May every year the hae day :-) aims to raise awareness of HAE among the general public and medical community in order to ensure better care, earlier and more accurate diagnosis, and knowledge that HAE patients can lead a healthy life. National member organizations and national HAE patient groups around the world support the event.
HAEi, the global non-profit umbrella network of national HAE patient organizations and groups, has initiated hae day :-) as part of its work to raise awareness of C1 inhibitor deficiencies around the world. Please see www.haei.org
HAE (Hereditary AngioEdema) is a rare genetic disorder.
HAE is characterized by spontaneous and recurrent episodes of swelling of the skin, the airways and the internal organs. HAE patients often withdraw from their social lives because of the disfiguration, discomfort and pain caused by symptoms. Almost all patients suffer from bouts of severe abdominal pain, nausea, vomiting and diarrhea caused by swelling of the intestinal wall. Edema of the throat, nose or tongue is particularly dangerous and potentially life threatening as it can lead to obstruction of the airway passages. There is currently no known cure for HAE, but it is possible to treat the symptoms.
HAE affects about 1 in 10,000-50,000 people worldwide. A lot of patients are still seeking the right diagnosis: although HAE is (in principle) easy to diagnose, it is frequently identified very late or not discovered at all. Please see www.haei.org