With 'Women in rare' “we wanted to focus attention on women with rare diseases and on women caregivers. This has been important from our point of view ever since there was the UN resolution on the rights of people with rare diseases, which specifically highlights the role of women. Until now we did not have enough and sufficient information to be able to describe the female situation. “After the white paper we can try to understand, with politics, where we can 'certainly' influence ourselves to improve the quality of life of these people”. Thus Anna Lisa Scopinaro, president of Uniamo, Italian Federation of Rare Diseases, today in the Senate at the presentation of 'Women and rare diseases: impact on life and expectations for the future', during the final event of the campaign promoted by Alexion, AstraZeneca Rare Disease.
From the white paper it emerges that “as women we have the heaviest burden when it comes to the care of patients with rare diseases – underlines Scopinaro – Women sacrifice themselves more: if they have rare diseases, they are still forced to leave their jobs or reduce their work activity due to the burden of the disease; if 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 job or reduce their work activity.
“I believe that this system that we are measuring and that we are trying above all to inventory in order to find optimal solutions – concludes the president of Uniamo – should be observed carefully, precisely because it is not correct that it is always the woman who pays the costs of all this “.
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