“We have produced a white paper because there is a need to shine a light, a spotlight on the condition of women who suffer from a rare pathology, or who accompany a child who has a rare pathology”. This was said by Guendalina Graffigna, professor of consumer and health psychology at the Catholic University and director of the EngageMinds Hub research centre, on the sidelines of the presentation of 'Women and rare diseases: impact on life and expectations for the future', the first white paper containing information, qualitative investigations and testimonies from women, both patients and caregivers, who live with rare diseases. The text was presented on 22 April in the Senate, on the occasion of the final event of the 'Women in Rare – the centrality of women in rare diseases' campaign, conceived and promoted by Alexion – AstraZeneca rare disease, together with Uniamo, with the participation of Fondazione Onda, Ets, EngageMinds Hub and Altems of the Catholic University.
#Graffina #EngageMinds #Hub #White #Paper #spotlight #rare #pathologies #women #children
