Heroes, sure, but that’s not all. People with rare diseases they are real and, just like the others, they live on instincts, desires, abilities, limits, dreams. Elements in which everyone can identify, regardless of their state of health. And to break down the usual stereotypes, according to which rare patients are delicate and impalpable beings, stable on the pedestal of good feelings, the Rare Diseases Observatory (OMaR) has created #TheRAREside, the social talk live on site, Facebook e YouTube.
Rare diseases: the social talk starts in 10 episodes
The campaign, which aims to create a new imaginary – less heroic and more everyday – of people with rare diseases, is a journey 10 episodes that will lead users to explore little-traveled territories, of which little has always been said. Altogether there will be 13 guests, each of whom will address a different theme: let’s start with primary needs, such as sexuality, nutrition, sleep, work, independent living, to get to social needs, such as sports, travel, and time with friends. The appointment with the social talk, which is live to allow anyone to interact with reactions and comments, is every Tuesday and Thursday, from 17.30 onwards, from February 16th to March 16th.
The themes and guests of the first two episodes have been revealed
The guests for now remain almost all top secret; advances were given only for the first two episodes. The first, that of February 16, which closely follows the Valentine’s Day celebrations, can only touch on the theme of sexuality. We will talk about “living, joyful and joyful” people, as the protagonist, Armanda Salvucci, creator of the project, likes to define them Sensuability, did mom say anything to you?. People with rare disease are often presented as angels or asexual beings, and instead they are individuals of flesh, bone, heart and hormones: very little is said about sex, and about the different possible sexual orientations, yet this is part of that everyday life on which The Rare Side wants to shed some light.
The second episode, that of February 18, will be dedicated to the themes of work and family. The protagonist will be the journalist, writer and mother Francesca De Sanctis, who will tell her “story on the contrary”: for her, born and raised without particular physical problems, the rare disease arrived later but also the precariousness came after the stability .
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