|
HAEI – International Patient Organization for C1 inhibitor Deficiencies - is a global organization dedicated to raising awareness of C1 inhibitor deficiencies around the world. It is a non-profit international network of national HAE patient Associations.
HAEI is established to promote co-operation, co-ordination and information sharing between HAE Specialists and National HAE Patient Associations in order to help facilitate the availability of effective diagnosis and management of C1 inhibitor deficiencies throughout the world.
Our purpose is to join the efforts and experience of the global HAE community to achieve optimal standards of care and treatment for all those patients affected by C1 inhibitor deficiencies.
What are C1 inhibitor deficiencies?
C1 inhibitor deficiencies comprise Hereditary (HAE) and Acquired Angioedema (AAE) both rare and potentially fatal disorders resulting from a deficiency of a plasma protein known as C1 esterase inhibitor (C1 Inhibitor). Hereditary angioedema (HAE) is clinically characterized by recurrent and self-limiting skin, intestinal, and life-threatening laryngeal edema. HAE attacks carry a substantial risk of morbidity or even mortality, making it imperative that the correct diagnosis be established and an appropriate management plan be in place. Acquired Angioedema (AAE) differs from the hereditary form by later age of onset and lack of family history but the two syndromes are clinically indistinguishable.
|
