(Adnkronos) - “Il nostro impegno sul Libro Bianco nasce e deriva dalla nostra missione da oltre 30 anni: trasformare la vita delle persone che convivono con una malattia rara e quella dei loro cari che cercano di dare un supporto alla famiglia”. Così Anna Chiara Rossi, vice president e general manager Alexion - AstraZeneca rare disease, a margine dell’evento conclusivo della campagna ‘Women in Rare - la centralità delle donne nelle malattie rare’, ideata e promossa dall’azienda farmaceutica, insieme a Uniamo, con la partecipazione di Fondazione Onda, Ets, EngageMinds Hub e Altems dell’università Cattolica. Svoltosi al Senato della Repubblica, l’evento è stato l’occasione per presentare ‘Donne e malattie rare: impatto sulla vita e aspettative per il futuro’, il primo libro bianco contenente informazioni, indagini qualitative e testimonianze di donne, sia pazienti che caregiver, che convivono con malattie rare.
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00:00Our commitment to the White Book derives a bit from our mission.
00:11Our mission for over 30 years is to transform the lives of people who live with rare malnutrition
00:18and those of their loved ones who seek to provide support to the family.
00:24This is our vision for the project.
00:27We try to carry out our mission in two ways.
00:31We focus on research and development,
00:34so we try to provide people with transformative drugs
00:38that can have a real impact on the natural history of the disease.
00:43At the same time, we try to listen to the needs of the community,
00:49especially those of the patients,
00:52in order to understand, beyond the drug, what needs are still to be met.
00:57I said that this project, the White Book, the Women in Rare project,
01:03is based on this, because after years of listening to the community,
01:08we realized that the impact of rare malnutrition on women's lives was really dramatic and devastating.
01:15Why on women's lives?
01:18Because 90% of caregivers, or those who take care of a rare patient, are women,
01:25today in Italy, and because many rare diseases have a greater impact on women.
01:31So, with this research, we wanted to try to transform and make evident
01:38those that were many anecdotal stories and examples,
01:42trying to create and collect solid data
01:47that would really give an idea of what the impact is,
01:51what are the difficulties that every day women engaged in this field
01:57have to overcome in some way,
02:01and try to value them also from an economic drug point of view,
02:07to try to understand what the impact can be.
02:11Why? Because the idea is, once these data are published,
02:16so today for us is a fundamental stage, having the White Book available,
02:21the idea is to share it with all the institutions,
02:25to try to understand what can be, also in the future,
02:29the laws, the new ideas, the new supports
02:34that can, in some way, go and solve these gaps.