• Sat. Oct 16th, 2021

Rare Diseases, from Omar White Paper on Huntington’s Chorea

Byeditorial

May 13, 2021

San Vito’s dance, demonic possession or, more elegantly, ‘korea’, which in Greek means ‘dance’. There are several names attributed, over the centuries, to Huntington’s disease, from which at least 6,500 suffer in Italy. A pathology of the individual, but also of the family, often a ‘secret’ kept in a mixture of stigma, fear and shame. The people and families who experience this pathology are carriers of enormous unmet needs: clinical, certainly, but also welfare, social, work, inclusion. From the need to bring out and address these needs the white paper ‘Huntington. From a family affair to a public issue ‘. Written by the Huntington community with the support of Roche, the ‘LIbro bianco’ is edited by the Observatory for rare diseases (Omar) and with the contribution of the Italian Association of Huntington Roma OdV, Huntington Onlus-The Italian network of Huntington’s disease and The Italian League Research Huntington Foundation onlus: a text – the first on this pathology – which aims to draw the attention of public opinion and institutions, so that they can know the needs of the Huntington community and take charge of them.The book was presented this morning in an online press conference, which was attended by some of the 30 authors, the three patient associations and a wide institutional representation: among them the senator for life Elena Cattaneo, awarded this important honor precisely for her merits linked to a long and passionate scientific research on this pathology. Among the many needs, a multidisciplinary care that includes psychological support and psychiatric management, the availability of assistance both in the form of relief centers and home services – also drawing on the appropriations of the Recovery Fund – and greater recognition were identified as priorities. legal for the protection of patients and caregivers at work. “It is time for Huntington’s disease – as well as other highly complex diseases with a strong psychological, social and even economic impact – to leave the family dimension and become a public issue, not only in the health sector, but also in terms of work, integration. and last but not least communication, because the dissemination of correct ideas is the best support for the implementation of valid actions “, affirmed Senator for life Elena Cattaneo. For Senator Paola Binetti, President of the Parliamentary Intergroup for Rare Diseases “the fact that families take care of people affected by the disease, without a doubt with love and dedication, cannot exempt the health and social system from taking care of their own responsibility”.