2023-04-20 13:09:00
“The company’s commitment dates back 30 years to transform the lives of people with rare diseases and their families, who are greatly impacted by them. We certainly intervene by developing and distributing innovative, effective drugs capable of treating the disease. However, we are aware that the path is complicated, which is why we are thinking of initiatives that give support to this community beyond the drug”. This was stated by Anna Chiara Rossi, VP & General Manager Italy at Alexion, AstraZeneca Rare Disease, at the presentation event of Alexion’s ‘Women in rare’ project on the impact of rare diseases on women’s lives.
“Doing research in rare diseases – explains Rossi – means dealing with areas without therapeutic alternatives and where very few have decided to take a risk. Out of 10 drug candidates, 90% fail for rare diseases. However, the drug that makes it is able to make a difference on the pathology. There are many examples. One of these drugs changes the patient’s history both in terms of quality and life expectancy, which goes from 2-3 years to that of the non-sick population. It is a very difficult path, but with an extraordinary impact”. The commitment to research is associated with that of going beyond the drug. “We have 22 clinical trials in progress in Italy – we will conclude another 8 – and we count on the involvement of more than 100 centers – recalls the General manager of Alexion – This is a therapeutic contribution, but to go beyond the drug we have come into contact with associations and with the caregivers we involved so that they could tell us, through their stories, the unexpressed needs on which to create projects”.
“I have been working in rare diseases for years and the stories have come mainly from women because, beyond being patients themselves, they are caregivers, they are mothers – underlines Rossi – We tried to understand which project could make the difference for them. We started by investigating the impact of this condition in women to see if there was any data. We had confirmation that they weren’t there – he recalls – so the first step was to create evidence that could support not only us as a company, but also the political world, to create those opportunities that are missing today”. The UN has paid attention to rare diseases and gender differences. the ‘Women in rare’ project brings them together, brings them together. “Even at the level of our top management – specifies Rossi – there is a greater representation of women, we are 80% unbalanced for women. I don’t want to belittle dads, but listening to these women’s stories, we realize that it wouldn’t have been possible to follow our path. We would like to contribute – she concludes – to give all women the same opportunities ”.
#initiatives #drug