Lega del Filo d'oro, 50% of the deafblind people have a rare disease

the OSIMO - In 2019, the Diagnostic Centre of the Lega del Filo d'oro has treated 104 users - providing 69 evaluations, psycho-diagnostic, and 36 early intervention - and one person out of two was suffering from a rare disease (by recording a +15% in 10 years), as the syndrome of Charge - is the acronym that indicates a rare disease that affects different parts of the body and is recognized as one of the major causes of blindness and deafness, or Usher syndrome - genetic disorder caused by a mutation in any of 10 genes that produce deafness and degradation of the view. To help the many children with severe disabilities who every day face the inability to see and hear, and to understand that these diseases require a specific approach to a development education of the senses residues.

The number of solidarity. , The Lega del Filo d'oro launches fundraising campaign #EroiOgniGiorno, to which you can contribute to all today with a call from a landline, or a sms to the number in solidarity 45514 and on eroiognigiorno.en. In particular, with the collected funds will support the construction of classrooms for the educational activities of the new National Centre of Osimo. Every child has, in fact, need of environments tailored to carry out the activities functional to the full development of its potential.

the spread of The disease. rare diseases are a wide and heterogeneous group of diseases defined by the low prevalence in the population and at the european level, as well as in Italy, it defines "rare” disease is a disease that affects not more than 5 patients in 10,000 inhabitants. The number of rare diseases known and diagnosed ranges between 7,000 and 8,000, but these numbers are growing with the advance of science and, in particular, with the progress of genetic research. According to the Orphanet Italy, in our Country, people with a rare disease are about 2 million: 70% of the cases, these are patients in the pediatric age group, with 19mila new cases a year.

a diagnosis and the start of a path. To act promptly and prevent any side effects of pluriminorazione psychosensory to the Lega del Filo d'oro, with children under 4 years of age, you work through the early intervention. It is in fact in the early stages of a child's development that you can get the best answers, identifying, and valuing a timely basis, the potential and the residual skills. So, to gain precious time, immediately starts the path to rehabilitation and education that continues in collaboration with the family and the network of services in the territory.

multidisciplinary team . And' composed of medical doctors, psychologists, educators, therapists, and social workers, carries out an in-depth assessment of skills, potential and characteristics of the person, then placing in a rehabilitation program specific.

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