Hereditary angioedema (HAE) is a rare, potentially lethal disease caused by the deficiency of Cl inhibitor. It is characterised by recurrent swelling of the skin (causing disfiguration), of the bowel (causing severe abdominal pain), of the upper airways (causing asphyxia). There is very low awareness to this disease; thus a minority of patients reach correct diagnosis and treatment. Small and dispersed case-list and lack of epidemiological data lessen the value of clinical studies and discourage research aimed to develop new therapeutic strategies. We propose the creation of a European research group on HAE composed by scientist, clinicians and associations of patients involved in the field of HAE. The project is aimed to improve the quality of life of HAE patients through:
(i) creation of a European register for HAE;
(ii) improvement of existing therapeutic resources
(iii) identification of new targets for therapy.
Funding SchemeCON - Coordination of research actions
1066 CX Amsterdam