On the occasion of the European anniversary of Siblings Day, which is celebrated on May 31, a bill was presented in Italy calling for the establishment of the National Day of Rare Siblings, sisters and brothers of those with a rare disease. The initiative was born thanks to the alliance between Senator Paola Binetti, the Italian Society of Pediatrics and the Rare Diseases Observatory, the latter promoter of the Rare Sibling Project, which for some years has given a voice to thousands of people, particularly children and young people, who live in contact with a rare disease without being either full-time ‘patients’ or ‘caregivers’, but who still dedicate a lot of effort and part of their time to a brother or sister with a rare disease; they are the ‘rare sibling’, a term still little used and which requires attention, as well as the condition it indicates. The National Day, which was celebrated on May 31 to coincide with the European anniversary, wants to contribute to this: to be a recognition for thousands of brothers and sisters and to represent a moment of formation and information to raise awareness among families and public opinion on this complex and in many cases unknown theme, allowing even siblings to talk about their experiences without fear.
“Our society is heading towards a demographic crisis from which it seems difficult to emerge, thus depriving many young people of that particular form of friendship which is fraternity. Having the opportunity to share one’s life with a brother is the greatest wealth that a parent can leave a child, especially in times of difficulty that life inevitably places before each of us – underlined Senator Paola Binetti, president of the Parliamentary Intergroup for Rare Diseases – But if you have a brother with some disability, more or less serious, more or less rare, then the fraternity poses challenges that can be difficult and require ad hoc training, which allows you not to give up to one’s own life, while freely offering oneself to support that of one’s brother, in a current of affections full of meanings and perspectives. The rare siblings, when the inner freedom of self-giving mature, set themselves, despite many difficulties, as clear and luminous points of reference in a society often sick with self-centeredness and unable to build solid and lasting bonds. They teach how to have a family, to understand what a family is, as a powerful form of social cohesion, in which no one is left alone and no one is left behind “.
Just a few days ago, on May 27, the theme of rare siblings was also brought to the attention of the pediatric community thanks to a Symposium ‘Who are Rare Siblings really? Knowing ‘who lives and grows with a rare brother’ which took place on the occasion of the National Congress of the Italian Society of Pediatrics. The meeting, promoted by SIP, by the Italian Society of Pediatric Genetic Diseases and Congenital Disabilities (SIMGePeD) and by the Rare Diseases Observatory (OMaR), was born from the idea of starting a path dedicated to pediatricians who, especially for families facing rare diseases play a decisive role in the ‘taking charge’ of all members of the family unit. “The brothers and sisters of those with serious, complex and rare diseases deserve great attention – said the outgoing SIP president Alberto Villani – Almost always discreet, and in the background, because they know they cannot create problems, they have always had a very demanding inheritance and rarely explicitly requested: to take over from the parents when they will no longer be there. We must concretely try to build resilient pathways to help lighten a load that is difficult to bear alone. As pediatricians we are grateful to OMaR and to Senator Binetti for the proposal to set up this day which helps to draw attention to sibling and make them more visible ”.
As part of the Rare Sibling Project, the Online Experiential Groups will also soon restart with the aim of encouraging aggregation, comparison and exchange between rare siblings. A maximum of 20 siblings can participate in the meetings, which will take place from June to September, divided into two age groups: 14-18 years and 19-27 years. The first meeting for the age group of young adults will be held on 23 June, from 7 pm to 9 pm; the first meeting of the youngest will be held on June 28, from 4 to 6 pm. To participate in the Experiential Groups, just send an email to [email protected] Osservatoriomalattierare.it The activities of the Rare Sibling Project, carried out thanks to the unconditional contribution of Pfizer, are carried out in collaboration with over 30 patient associations and a scientific committee composed of ANFFAS-National Association of Families of People with Intellectual and / or Relational Disabilities and Siblings Onlus Committee .