“A lot can be done to improve the quality of life of people with rare haematological diseases starting, above all, from not considering them ‘sick’. This is why I really like Sobi’s project ‘Blood Inclusivity’, which turns the point of view on its head. That is, highlighting what unites and not what divides. I believe that this approach is the one that should be used for all rare diseases, to avoid creating isolationism and exclusion, rather than exclusivity.” Thus Annalisa Scopinaro, president of Uniamo – Italian Federation of Rare Diseases, on the sidelines of the Sobi event dedicated to inclusion and the possibility for people with rare haematological diseases to have a high quality of life. The event – which was held yesterday in Milan – is part of Sobi’s ‘Let’s Talk’ project, launched last October to delve into current topics and unexplored perspectives in the context of rare diseases.
Another element that emerged from the debate is the importance of sending a positive message to people with a rare or little-known haematological disease. Scientific research is making enormous progress. In addition to those achieved, new treatments are appearing, capable of ensuring an increasingly better quality of life.
According to Scopinaro, what holds back wider inclusion is the fact that “the person is not placed at the center of every discussion. We see the disease and not the person. What we need to do is a change of perspective, only in this way will we be able to consider the pathology one of the characteristics of the person, not his main characteristic,” he concludes.
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