The current educational model does not respond to the needs of children with rare diseases. Thus, 68% of the associations are dissatisfied with the educational inclusion of minors with a Rare Disease (ER) in the mandatory stages, while 73% of the associations are dissatisfied in the pre-compulsory and post stages mandatory.
Today (surely you have already read it) is World Rare Disease Day, and FEDER (the Spanish Federation) wants to denounce that serious and unfair discrimination situations occur that people with rare diseases They are suffering in the educational environment.
Taking advantage of this date, FEDER has presented its report "Reinforcement in Education" to transfer the reality of these families, and present proposals that favor access to education regulated at all levels by people with RD, while ensuring early comprehensive careIt is considered essential to intensify the inclusion of minors in ordinary educational centers through different types of schooling, promising technical and health resources, teacher training, and increasing family-school-patient associations. "More than 75 percent of the associations that have responded to the report believe that the most appropriate type of schooling is the Ordinary Center, compared to 10 percent who advocate a Special Education Center."
More than 70% of the associations that have responded to the Report ensure that the lack of information is part of the problem.
In this way, they consider insufficient teacher training to meet these needs and from the associations they propose that there be better awareness and specific training of professionals in their classrooms with children with RE, as well as favoring new technologies and promoting collaborative relationships. between associations and educational centers
In the educational field it is proposed achieve the normalization of students with ER in the classroom, and later in society, through a change of orientation, but also through adequate coordination between the different systems involved in caring for people with these rare diseases.
Beyond inclusive education, 14 claims are proposed, among which is the recognition of a legal framework for the protection of health and social rights, or that the copayment of medicines dispensed in hospital and outpatient pharmacies be eliminated immediately.
