(ANSA) – ROME, FEBRUARY 20 – Acting as a megaphone for the voices, dreams and needs of those living with a rare disease, speaking of diversity and uniqueness without hiding or exaggerating. This is the objective of the third edition of the campaign “#TheRAREside – Stories on the edge of rarity”, launched by the Rare Disease Observatory (Omar) for the world day of rare diseases. The campaign passes from a digital-only formula, in the pandemic, to a mixed one. On Wednesday 22 February the 5 video-stories that make it up will be presented at the Quattro Fontane cinema in Rome. Clara, Valentina, Mattia, Sara and Samuele are the names of the protagonists.
“The mission is to bring rare diseases into everyday life – explains the director Omar, Ilaria Ciancaleoni Bartoli -. For this to be possible, those affected must not be considered a ‘special being’ but a person with dreams, projects and even very common, but that in order to pursue them it must overcome obstacles that shouldn’t exist. Many can and must be removed such as the cultural barrier of ‘us’ and ‘them’, architectural barriers, rights established but denied in practice”. Clara’s story centers on early diagnosis and newborn screening for spinal muscular atrophy (Sma). Thanks to the neonatal screening pilot project activated in Lazio, which later became a regional law, Clara was able to receive a diagnosis of Sma 1, even before she showed symptoms. From here a revolutionized life, as mother Gloria and father Fabio underline, thanks to the quick access to therapies. Today she is fine and walking.
In “Freedom rhymes with accessibility”, however, Valentina, the protagonist, talks about mobility also understood as the pleasure of travelling. The binomial work-inclusion is dealt with in “Rights to work”. According to Mattia, the protagonist, the goal is to get everyone used to considering disability part of everyday life. Home therapy is central to “Il mio tempo”: the story of Samuele, a teenager with Pompe disease who, thanks to access to treatment from home, has recently been able to live his routine avoiding travel. Then there is the relationship between people and animals, in which the latter are not considered simply for assistance, but in terms of the emotional bond: “A special relationship” talks about it. (HANDLE).
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