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A lecture held by Michel Raguet, head of the French HAE patient organisation, AMSAO - Association des Malades Souffrant d'Angio-Oedèmes par déficit en C1 inhibiteur and vice presidient of the HAE world organization HAEI - Hereditary AngioEdema International.
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HAE: A patients point of view
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- Michel Raguet
Patients report on HAE
Summary
In this lecture Michel Raguet describes HAE from his own, a patients point of view. His personal story is presented as a typical example for a patient suffering from HAE since early childhood. He experienced his first attacks in the 1960s but it took more than 15 years until he got his correct diagnose. Initially he was treated with androgens, but had to switch after several years due to severe side effects. He founded the French patient organisation AMSAO. Besides serving as the head of the national French patient organisation he is a board member and the vice president of the international patient organisation HAEI.
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 HAE 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 HAE.
AMSAO - Association des Malades Souffrant d'Angio-Oedèmes par déficit en C1 inhibiteur
The
goals of AMSAO are to facilitate the exchange between the patients
affected by the disease and to enhance the sharing of experience as
well as the broadening of the patients’ knowledge about the current
state of research and improvements of therapeutic options.
HAEI - Hereditary Angioedema International
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 HAE 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 HAE.
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Author: Jerini AG
Source: HAE-Network Status: 3/08 |
