‘Rare nights’, an EPN initiative, arrives in Bassano del Grappa

‘Notti rare’, the information campaign on paroxysmal nocturnal hemoglobinuria (Epn) promoted by Sobi, a multinational biopharmaceutical company leader in the development of innovative therapies aimed at improving the lives of people with rare diseases, arrives in Bassano del Grappa. Notti rare is an initiative in music under the stars dedicated to the 350 Italians with Epn, which takes shape thanks to the notes played by Eleonora Montagnana, a young classical violinist, with over 300,000 followers on TikTok, also known thanks to her participation in programs television, recordings and concerts alongside nationally and internationally renowned artists. The musician and influencer will give life to a nocturnal performance (as a reminder of the ‘nocturnal’ characteristic of the disease), starting at 10 pm, in one of the most evocative and scenic areas of Bassano: the Ponte Vecchio, symbol of the city in the Vicenza area. The live performance, on the notes of ‘Rewrite the stars’ and other pop songs, is accompanied by a rich social programming on the artist’s channels – TikTok, Instagram and Facebook – which will give users the opportunity to enjoy the performance even from home . “I am happy and proud to be able to take part in an initiative such as Rare Nights – says Montagnana – I hope my music can be useful not only for a social awareness of this ultra rare pathology, but also to give some lightness and a sweet awakening for people with paroxysmal nocturnal hemoglobinuria “. Epn, at the center of the Rare Nights campaign, is in fact a disease characterized by episodic manifestations at night and in the morning, with symptoms that are not always evident: to recognize them, you need to pay attention to your body, literally ‘listen’, as in the case of a melody, of a symphony of notes. The goal of the initiative – reads a note – is to shed light on this ultra-rare chronic disease that affects between 0.5 and 2 people per million inhabitants. Characterized by anemia (low hemoglobin), an increased risk of thrombosis and debilitating symptoms, it occurs when the cells in the bone marrow responsible for producing red blood cells (which help carry oxygen around the body) mutate and produce defective blood cells. The debilitating symptoms of this blood disorder include fatigue (affecting as many as 96% of patients), difficulty concentrating, abdominal pain, dyspnea, among others. Recognizing and diagnosing the disease quickly is important to define an effective therapeutic path and guarantee a concrete improvement in the quality of life of these people, who perform even the simplest daily gestures with great difficulty. 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. Among these are drugs inhibitors of complement C5 (C5i), folic acid, iron and vitamins, prophylaxis or anticoagulant therapy, erythropoietin, transfusions. In 2021, the first of the C3 inhibitors (C3i) was approved by the European drug agency EMA: they represent the new class of therapies that inhibit complement 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 – declares 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, Rare nights will invite the public and people with Epn to literally listen: the first listening to 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 Bassano stage is the second of three evenings scheduled from June to September: the first was held in Bologna on Tuesday 28 June, while the next appointment is scheduled in Bari on Tuesday 13 September.