One voice for anaphylaxis in France: The vision of the centre of reference in rare diseases
Résumé
In October 2016, the French Minister of Health launched a call for new Centers of Reference in Rare Diseases (CRRD). In order to support
quality clinical practice, prevention and research for patients presenting severe anaphylaxis, together with 15 French public health institutions
(Competence Centers in Rare Diseases–CCRD), we submitted a proposal named ANAFIL. French data suggest that fewer than 30,000 people
are affected by severe anaphylaxis, with 9.2 per 100,000 person-years based on data from the University Hospital of Montpellier. Cumulative
incidence is an inadequate measurement here, since the reaction is no longer active once the episode is resolved and one patient can present
different episodes of anaphylactic reactions. Covering 7 of 12 administrative regions in France, all 16 centres making up the ANAFIL network
are linked to academic activities, supported by medical and patient associations. Given that anaphylaxis is considered a public health issue by the
global allergy community, the ANAFIL proposal provides a key window of opportunity for the construction of a solid academic French consortium
that will redress implementation gaps in the field.