Our association is run by families who have themselves been victims of this disease, and who fight every day to improve prevention of this infectious and devastating disease. Within the association, we are all volunteers, and most of our board members have lost a child. We use our own experience to inform the general public, answer parents’ questions and share our stories to raise awareness among healthcare professionals. We communicate with stakeholders throughout the year to intensify meningitis prevention efforts.
In France, since 1 January 2025, in response to the alarming resurgence of meningococcal meningitis observed in recent years, the vaccination schedule has been updated, particularly for infants, adolescents and young adults. Our association contributed to this change, which had been long-awaited by patient associations and healthcare professionals. Our president, Patricia Merhant-Sorel, is a co-founder of the “Ensemble Contre les Méningites” (Together Against Meningitis) collective (co-founded with another French meningitis group, Association Audrey). We are also members of the national coalition “MéninGO!”.