“Women are those who sacrifice themselves the most: if they are victims of a rare disease they are still forced to leave their jobs or reduce their work activity due to the burden of the disease. If they are caregivers, it is taken for granted that they are the ones who have to take care of the person with a rare disease and therefore, again, leave their jobs and reduce their work activity”. These are the words of Annalisa Scopinaro, president of Uniamo – Italian Federation of Rare Diseases, 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, living with rare diseases. The text was presented on 22 April at the Senate of the Republic, 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.
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