II Multiplier Event, Murcia 30 April 2021

VI EDUCATIONAL CONGRESS ON RARE DISEASES

Her Majesty the Queen has chaired the VI Educational Congress on rare diseases held at the public school for children and basic education “Guadalentín” in El Paretón, a district of the Murcian town of Totana. This conference has focused on the educational, social and health challenges that rare pathologies pose in the classroom, such as those derived from periods of hospitalization or the consequences that are not so closely linked to the disease but to the social repercussions that arise from she.
Accompanied by the Minister of Education and Vocational Training, Isabel Celáa, Her Majesty was received upon her arrival at the school by the President of the Region of Murcia, Fernando López Miras; by the Government delegate in the Autonomous Community of the Region of Murcia, José Vélez; by the mayor of Totana, Juan José Cánovas; and by the president of the Spanish Federation of Rare Diseases (FEDER), Juan Carrión.

After the greetings, His Majesty entered the school pavilion to attend the congress day, which began with a discussion table entitled “Advances, challenges and challenges of rare diseases in the educational field”, moderated by the president of FEDER.

Under the slogan “Building networks, consolidating projects towards an inclusive society” and nationally and internationally, FEDER has brought together administration, students, teachers and families involved in addressing the social and health needs of these minors.

9.00–Virtual accreditation
9.30–Welcome
9.40–Roundtable “Access to Learning”
•D ́Genes Association:”Classroom education intervention project for children with a rare, undiag diagnosed or disabled disease”
•AsociaciónNacional de Huesos de Cristal(AHUCE):“State School Counseling Program in Osteogenesis Imperfecta”
•CEIBasGuadalentín–CenterforChildandBasicEducation:”GoodeducationalpracticesofCEIBasGuadalentíntopromoteinclusion”
•Romanian National Alliance for Rare Diseases(RONARD):“Holisticcare initiatives in Romania: Bridging the gaps between medical, educational and social services for people living with rare diseases”» 10.10–Roundtable “Social and affective development”
•Cambrils School of Special Education:“Proyecto“Incluidos somos más especiales: La experiencia de la inclusión educativa desde un colegio especializado”
•Asociación Retina Murcia(RETIMUR): “Cómo nos ven los que ven”
•Asociación Síndrome de Williams España(ASWE):“Servicio de Orientación Educativa”
•Centro Educativo Asthon Secondary”(Glasgow):“Método Froebel en Enseñanza Secundaria”» 10. 35–Roundtable “Research is our future”
•University of Murcia: “Systematization of Good Inclusive Practices in the Educational Response to Students with Rare Diseases”in the Autonomous Community of the Region of Murcia
•University of Valencia: Erasmus+ CREDIBLE Project
•Asociación Síndrome 22q11: “Study of the impact on academic, socio-affective and health development in people with 22q.11 syndrome and their families due to COVID-19 confinement”
11.00–Pause: Project visualization“Eres Arte”
11.30 –Roundtable of conclusions “Advances, challenges and challenges of rare diseases in the educational field”
•Family: mother of minor with rare illness, will pose defined challenges aboutaccess to learning for students with rare diseases
•Students:undiagsed student and classroom classmate, will transfer the importance of creating a school for all, from a holistic approach, beyond architectural barriers, generating a safe environment, favoring social and affective development.
•Teacher:guiding of the CEIBas Guadalentín will publicize the research model that is carried outin the teaching practice of the dayto day. Emphasizing creativity, innovation in the classroom and collaboration with patient associations for this purpose.
11.55 –Roundtable “Technological Innovation”
•Fundación Rafa Puede:“SuperGiz in the educational environment”
•Asociación Española de Síndrome de Rett:“Talking looks”
•Asociación Catalana XFrágil:“Child Care Program: Education and Technology”
12.15–End