2024-02-05 07:16:50
by Vera Martinella
Beppe Vessicchio the testimonial. There will be Fantasanremo teams with the name of Uniamo, association of rare disease patients. In Italy there are around two million: they would fill a 175 kilometer long subway
Not just songs, shiny dresses, entertainment and gossip. For years, moments of reflection on political, cultural or socially relevant issues such as racism, homosexuality or gender violence have been included in the program of the Italian Song Festival. Thus, in the 2024 edition, the Sanremo spotlight will also illuminate rare disease patients: adults, teenagers, children and their families forced to live with the double difficulty of an often disabling pathology and with the fact that it is little known, in many cases without a cure. The daily obstacles are infinite, the sense of loneliness is great. Because of this Uniamo, the Italian Federation of rare diseases, launched the hashtag #rarimaisoli which arrives at the Festival with various initiatives and one objective: We would like to make it clear that people with rare diseases are not their pathology, but are first of all people – underlines Annalisa Scopinaro, president of Uniamo -. Who have aspirations, desires, talents. Who despite the pathology have the desire to live and be included in everything that is achieved. And that there are also many people with rare diseases who unfortunately, precisely because of the pathology and its severity, will never be able to live a normal life. We need to think of a world that takes everyone’s needs into account, so as not to leave anyone behind, as is our slogan. And only by working and building together, taking into account all needs, can we hope to achieve true equity.
The families
Annalisa knows well what she is talking about: she has always been active in volunteering, mother of Sara, Davide and Agnese. Her second son, now a young man, has a rare genetic disease, Williams syndrome. A difficult pathology, characterized by developmental disorders associated in most cases with heart disease, psychomotor retardation, facial dysmorphism. To date, there is no news of adult children who can live a completely independent life and the need for psychophysical rehabilitation practically continues, from early childhood onwards. Each unique story, but the infinite obstacles to overcome unite the complicated lives of millions of people living with a rare disease: children, their parents and siblings. All the families of the patients, adults and otherwise, have to deal with a pathology that is as rare and little known as it is cumbersome in everyday life.
Two million in Italy
Rare disease patients in Italy would fill a 175 kilometer long subway: there are around two million, including adults and children, and estimates according to experts are low. One in five patients is under the age of 18 and 70% are diagnosed in childhood. Taken individually, the approximately 8 thousand rare diseases listed by the World Health Organization (but even this number is most likely lower than the reality, because it is difficult to collect precise data) affect few people, but overall they have an enormous impact. Those affected by a rare disease, which often has a genetic origin and strikes in early childhood, are forced to sacrifice a good part of their time and energy for visits, tests and checks – underlines Scopinaro -. Many then have to deal with disabilities of various kinds and with the psychological weight of their condition. Patients and their families are unable to live their lives to the full, missing out on many important moments. Only a few, then, can count on effective therapies.
Sanremo for the kids, sick and healthy
Uniamo in Sanremo is focusing everything on young people. On the one hand, the many children who have received a diagnosis since early childhood and have had to learn to live with the disease; on the other, on their healthy peers that the Federation would like to involve. Many of our children are growing up, they represent the future and they are the ones who will have to fight for their rights as we have done for many years – remembers Scopinaro -. We dedicate “the stage” to them because they have often hidden talents that must be able to emerge. We wanted to make the kids in our community feel less alone and raise awareness of those who are more fortunate, who are not sick, but who will have to plan the world of tomorrow. And we would like it to be increasingly inclusive. Thinking about Sanremo and especially Fantasanremo was instinctive: what better way to reach a large portion of the population, in a nice and fun way? We found attentive interlocutors who guided us in this world that was a little different than usual for us.
Beppe Vessicchio testimonial
What initiatives are planned? As far as Fantasanremo is concerned, awareness is raised towards all the rare pathology associations, which have begun to form teams with the name of the association and to join the Uniamo League. This is accompanied by an intense social campaign and also the initiative of the Istituto Superiore di Sanit, which launched an Instagram contest: the jury will be made up of young people with rare diseases and one of the prizes will be given to those among the young people who those who participate will have obtained more likes with a post that refers to Fantasanremo or one of the Day’s initiatives. Furthermore Beppe Vessicchio, historic Sanremo conductor, has agreed to be our testimonial for the video launched on January 31st. Then there are initiatives planned in Milan (with a convoy of the lilac metro line, a branded tram and bus shelter, and the march of rare disease patients), Bologna, Venice, Rome, Bari, Catanzaro and Palermo. Many schools have asked us for the material. Furthermore, during one of the Sanremo evenings there will be a surprise involving the Federation and the singers: #uniamoleforze. Speaking of music, Annalisa Scopinaro has a favorite song, in which she sometimes reflects herself. 2016 song by Alessandra Amoroso. The singer talks about a love, for the president Let’s unite the cause of people with rare diseases. Go anyway / Even when you feel like you’re dying / So as not to stay doing anything waiting for the end / Go because you don’t know how to stand still / You will persist in looking for the light at the bottom of things.
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February 5, 2024 (modified February 5, 2024 | 08:16)
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