A rare disease is any disease that affects a small percentage of the population . The fact is that although a disease is described as “rare”, it is estimated that the number of people in Europe suffering from a rare disease is greater than 30 million . Rare diseases affect not only people diagnosed, but also families, friends, caregivers and the whole society. Most rare diseases are genetic and are present throughout a person’s life, even if the symptoms do not appear immediately. In Europe, a disease or di
Numerous reports on the current situation of children with rare diseases coincide in the weak points of the educational system when it comes to responding to this group. Many complaints focus on the scant attention that children are receiving from teachers, who in some cases even refuse to teach their subjects. 73% of the associations express dissatisfaction with the educative inclusion in the pre-compulsory and post-compulsory stages.
The problem in the educational environment occurs at different levels, causing a domino effect. Beginning with an ignorance and social incomprehension , which implies indifference from the administrations and is clear taking into account the absence of appropriate resources available to students . Both levels can be harmful to the participation of teachers and families and, in turn, results in discrimination and rejection in the classroom. All this falls on children, affecting their development.