‘Health equity, experiences and objectives for a better Quality of Life of people with rare diseases’, the third event of the ‘Let’s Talk’ project, born last October with the aim of exploring current topics and unexplored perspectives in a context that is still little known in some respects, such as that of rare diseases.
The meeting – reports a note – highlighted objectives, points of view, experiences to address a central theme, namely inclusion, and the question from which the debate arose was: what to do to improve the quality of life of people with rare diseases, in this specific case haematological ones, to achieve real ‘health equity’? Not only from the point of view of pharmacological treatments. In fact, we also talked about what the needs are in the everyday life of a person with a haematological disease, sometimes even a rare one, considering the social, family, school and work spheres. The aspects linked to access to therapies and personal assistance in the broadest possible sense were then examined, including the aspect of services and psychological support. Last but not least, the issue of information and patient involvement in their own treatment process, the so-called empowerment, because this is also part of the concept of inclusion and health equity.
“Referring to a rare disease such as haemophilia – said Patrizia Di Gregorio, haematologist and director of the Vasto-Chieti ASL Transfusion Medicine Service – an important element to promote inclusiveness, especially for the younger generations, is being able to carry out the activities of one’s peers and having an active social life, among other things, doing physical activity and even sports, without however falling into excess to prove that one is not ill greater levels of protection, thanks to which we will be able to increasingly start thinking about normalizing haemostasis. This helps the person with haemophilia to gain confidence and reduce anxiety, therefore promoting sociability and a fully active life”.
Recently Sobi – we read in the note – launched the ‘Blood Inclusivity’ project to promote the concept of inclusion in the field of haematological diseases, including rare ones, through blood, a vital element of every human being. This information campaign, which starts from the publication of a website, is made up of 8 podcasts in which as many standuppers tell their daily lives in an ironic and light-hearted way, each with their own style and experience, to communicate the message that every blood type, regardless of intrinsic characteristics, has the right to enjoy the same quality of life.
“The thing that people with rare diseases have in common is that they don’t want to feel sick, which is why we tend, through treatments or lifestyle changes, to ensure that they can have the least possible physical or emotional impact on the environment that surrounds them. surrounds – underlined Annalisa Scopinaro, president of Uniamo Italian Federation of Sea Diseases – The formula chosen by Sobi, of Blood Inclusivity, is an innovative way to address the topic and certainly suitable for the younger generations The focus of the discussion must not be the disease, but as everything that does not concern the disease affects a person’s life, we must treat all the elements of the pathology from the point of view of those who do not have a blood disease. This change of perspective makes you feel less different from others. What divides is the disease, but what unites is blood.”
Another element that emerged from the debate is the importance of sending a positive message to people with a haematological disease. Enormous progress is being made in the scientific and therapeutic fields. In addition to those achieved, new treatments are appearing, capable of ensuring, in many cases, an increasingly better quality of life.
“It is essential to raise people’s awareness of the fact that some rare or little-known hematological diseases are changing their history thanks to innovation – highlighted Davide Petruzzelli, president of La Lampada di Aladino Ets – These successes are also reflected in the history of the patients, who they find themselves facing prospects that were unimaginable until a few years ago, to advance research and improve patient care, it is necessary to create synergies between institutions, clinicians, companies and patient associations burden not only of diseases, but also of patients. It is important to underline the goals achieved for patients through the role of patient associations, they constitute a benefit for all citizens and society”. Moments of discussion “like today’s have the merit of bringing out elements of reflection and dialogue on current issues and on the transformations underway in the context of diseases rare – concluded Annalisa Adani, vice president and general manager Sobi Italy, Greece, Malta and Cyprus – sharing the problems that people living with these pathologies have in common. The objective is to highlight the ‘unmet needs’ and to describe the current context in which all the actors move. Sharing is essential to identify new possible paths of inclusion together, because every individual, regardless of the pathology they live with, has the right to be able to have the best possible quality of life, in an extended community, not just in the restricted community of those is a carrier of the disease.”
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