Rare diseases, two online surveys for patients and caregivers

Rare diseases, two online surveys for patients and caregivers

There are over six thousand different pathologies and in total they affect two million people in Italy, i.e. 5% of the population. We are talking about rare diseases, which especially affect the quality of life of women. Precisely to shine the spotlight on this topic, Uniamo (Italian Federation of Rare Diseases) launched two online surveys: one directed at patients and one for caregivers (available on the Federation website). Which in both cases are very often – in fact – women.

The Women in Rare project

The initiative is part of the larger “Women in Rare” project, promoted by Alexion, AstraZeneca Rare Disease in collaboration with Uniamo, EngageMinds Hub, Fondazione Onda and Altems and born last spring to put women at the center in their dual role : of patients suffering from rare diseases and caregivers who take care of people affected by this type of pathology. “A generative project aimed at investigating in depth aspects that are not always part of the public debate on rare diseases – explains Annalisa Scopinaro, president of the patient association – The objective is to investigate in depth the repercussions in the workplace, the economic and financial and all medical-health complexities”.

Hence the need to raise awareness both among the institutions and the population, through public events, social campaigns and publications. “It is necessary for a medical-welfare approach to develop that is more oriented towards the female gender and its peculiarities – continues Scopinaro – These range from reconciling working life with the responsibility of caregiver, to self-perception, up to issues related to fertility”. In Italy there is a national network of absolute excellence of Reference Centers for the prevention, diagnosis and treatment of rare diseases which works in synergy with other European networks, but – underlines Scopinaro – there is still a long way to go ”.

The objective of the survey for patients and caregivers

The “Women in Rare” project is coordinated by a scientific committee which includes specialists and representatives of patient associations and the launch of the survey follows up on what has already been done: “The results will be able to provide an even clearer picture of the needs, of the doubts, fears and aspirations of those who suffer, directly or indirectly, from these pathologies – concludes Anna Chiara Rossi, VP & General Manager Italy at Alexion, AstraZeneca Rare Disease -. In this way, together with our project partners, we confirm our commitment to identifying actions that can improve the conditions and life expectancies of patients and their families.

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