“When we started dealing with rare diseases many years ago, we used the slogan” don’t talk about us, but talk to us. “It was a way of saying that the person must tell himself, tell his story, tell the symptoms of his pathology, because the symptoms also acquire a different importance, depending on how they are placed in the story of a person who is able to look beyond the limit of the pathology. For some, seeing beyond the limit of his own pathology becomes a real and own opportunity “. Thus the senator Paola Binetti, president Parliamentary Intergroup for Rare Diseases, speaking at the presentation of the second edition of the social talk TheRAREside – Stories on the edge of rarity, conceived by the Observatory for rare diseases at the turn of the World Day of Rare Diseases, which is celebrated on 28 February. The Omar campaign which has the patronage of Ferpi, Alleanza Rare Diseases, Bambino Gesù Children’s Hospital, Uildm and Uno Sguardo Raro – Rare Disease International Film Festival.
“I often talk to parents who have children with rare diseases – says the Senator Binetti – and I see in these families such a determination, such an ability to want to make the best resources available to their children from the point of view of health, education, and I realize that from their intelligence, their solidarity and their ability to network with other parents the most effective solutions come to light. In fact, from these experiences arise the associations of rare patients, extraordinary examples of courage and determination of families who take charge of their discomfort and transform it into an opportunity “.
At times it can become “difficult to open up to contact with others – continues Binetti – to tell others about oneself. When you have the feeling that someone next to us has some difficulty, even our resistances fail and we feel we are in the ‘same boat’. And being all in the same boat, all rowing on the same side, is feeling part of that polis that helps to make good politics “.
And with regard to the approval of the Consolidated Law for 2 million Italian rare patients, Binetti has no doubts: “A result that fills us with joy even if it is far from definitive; the implementing decrees and many other things will be needed. But this law it is the result of the alliance between civil society, the world of institutions, associations and patients. We were in the same boat and were all rowing in the same direction “, he concludes.