NewsHealthLaunch of 'Notti Rare', an initiative on paroxysmal nocturnal...

Launch of ‘Notti Rare’, an initiative on paroxysmal nocturnal hemoglobinuria

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It affects between 0.5 and 2 people per million inhabitants with symptoms that are not always evident and in any case not easily recognizable. It is Paroxysmal Nocturnal Hemoglobinuria (Epn), an ultra-rare blood disorder characterized by anemia, an increased risk of thrombosis and debilitating symptoms, which occurs when the bone marrow cells, responsible for the production of red blood cells, are essential in helping to carrying oxygen around the body, they mutate and produce defective blood cells. Defective red blood cells become attacked by the complement system (a component of our immune system), which destroys them. This process of destroying red blood cells is known as hemolysis. To shed light on this rare chronic disease, characterized by episodic manifestations at night and in the morning, “Notti Rare”, the information initiative promoted by Sobi, a multinational biopharmaceutical company, leader in the development of innovative therapies aimed at improving the life of people with rare diseases. Symptoms of the disease include, among others, fatigue (affecting as many as 96% of patients), difficulty concentrating, abdominal pain, dyspnea. Recognizing and diagnosing the PN quickly is important for defining an effective therapeutic path and guaranteeing a concrete improvement in the quality of life of these people, who perform even the simplest daily gestures with great difficulty. Signs and disturbances are not always evident: to recognize them, you need to pay attention to your body, literally “listen”, as in the case of a melody, a symphony of notes. For this reason “Notti Rare” is an initiative in music under the stars dedicated to the 350 Italians with Epn – reads a note from Sobi – which takes shape thanks to the notes played by Eleonora Montagnana, a young violinist of classical training, with over 300,000 follower on TikTok, also known thanks to his participation in television programs, recordings and concerts alongside artists of national and international fame. The musician and influencer gives life to three outdoor night performances, walking through the most iconic streets of the cities, the stage of this campaign – Bologna, Bassano del Grappa and Bari – alternating songs of pop music. The live performances are accompanied by a rich social programming on the artist’s channels – TikTok, Instagram and Facebook – which will give users the opportunity to enjoy the performances even from home. The setting for the first stage was Bologna last night: for the occasion, Eleonora Montagnana performed on the Pincio Steps, one of the most scenic and evocative corners of the city, with her own personal interpretation of the Coldplay song “A sky full of stars “. “I am happy and proud to be able to take part in an initiative like Notti Rare – says Eleonora Montagnana -. I hope my music can be useful not only for a social awareness of this ultra-rare pathology, but also to give a little lightness and a sweet awakening to people with Epn “. For people with Epn – continues the note – there are support therapies, i.e. treatments that do not allow healing, but alleviate the symptoms, reduce complications and improve the quality of life. These include folic acid, iron and vitamins, prophylaxis or anticoagulant therapy, erythropoietin, transfusions. But to date, the only possible cure for Epn is bone marrow transplantation. If successful, this procedure can permanently heal the patient. However, the risks associated with this procedure often outweigh the likely benefits and therefore it is an option reserved for more severe cases. Complement inhibitor drugs have been available since 2007, in particular C5 inhibitors (C5i), which work by preventing the involuntary destruction of defective red blood cells in the bloodstream (intravascular hemolysis) and significantly improving the symptoms of the disease. “Although it is a rare disease – underlines Antonio de Vivo, hematologist of the Institute of Hematology” L. & A. Seragnoli “, University of Bologna – it is one of the most studied and best known hematological pathologies. The fine understanding of the pathophysiological mechanisms of the disease combined with the progress of pharmacological research have made it possible to obtain targeted therapies: the therapeutic use of monoclonal antibodies capable of inhibiting uncontrolled complement activity has “dramatically” improved the expectation and quality of life of patients. But the research does not stop: therapies will soon be available that involve the administration of complement inhibitors both intravenously, at longer intervals, and subcutaneously and in the future also drugs for oral administration “. In 2021, the first of the C3 inhibitors (C3i) was approved by the EMA: they represent the new class of complement-inhibiting therapies by affecting C3, which is located upstream of C5 in the complement cascade. Inhibition of the C3 target allows to control, in addition to intravascular haemolysis, also the destruction of red blood cells in the spleen and liver (extra-vascular haemolysis). “Life with a rare disease is often veiled by a shadow that derives from the symptoms of the disease itself – highlights Giampiero Marra, Medical Director Sobi Italy, Greece, Cyprus and Malta – fatigue, anemia, brain fog can really compromise the quality of everyday life. and prospects for the future. Sobi, who as always cares about people with rare diseases, wants to bring a touch of lightness and delicacy to this community: this is why we have chosen a different communicative register. Thanks to the notes of a violin, Notti Rare will invite the public and people with Epn to literally “listen”: the first one to listen to the others, as a sign of openness to understand the difficulties and the often invisible weight of this pathology; the second listening to their own body, to realize how much quality of life they can still achieve thanks to therapeutic innovation “. The Bologna stage is the first of three evenings scheduled from June to September: the next appointment with “Notti Rare” is scheduled for Tuesday 12 July in Bassano del Grappa.

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