Rare diseases, Graffigna (Cattolica): “Central female figure in pathologies and assistance”

In rare diseases “there is a female prevalence of 52.4%”, which “is 1 million 48 thousand. In 90% of cases the burden of care for patients is absorbed by women, whose role is central. This is why we wanted create a white paper with data and concrete proposals not only to improve the quality of life of women, but because there is a need to shine a spotlight on the condition of women who live with a rare disease or have to care for a family member with a rare disease” . This was stated by Guendalina Graffigna, full professor of consumer and health psychology at the Catholic University of the Sacred Heart of Cremona and director of the EngageMinds Hub research center which oversaw the investigation, speaking today in the Senate at the presentation of 'Women and diseases rare: impact on life and expectations for the future', during the final event of the campaign promoted by Alexion, AstraZeneca Rare Disease.

“We carried out three phases of the research – explains Graffigna – a part of analysis of the scientific literature, a part of an in-depth qualitative investigation to collect the stories of women who live with the rare pathology and a quantitative analysis to quantify the burden, the of the disease'. The white paper is an opportunity to put the numbers on paper, but also to put forward proposals on what should be a priority to improve the care and care of women with rare diseases”.