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An Inclusive Response to Students with Rare Diseases from a Community Perspective: The Importance of the Active Role of Associations

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Research for Inclusive Quality Education

Part of the book series: Sustainable Development Goals Series ((SDGS))

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Abstract

Ensuring an inclusive and equitable education for all students is a challenge that we must continue to address globally. Today, there is a wide diversity of students in schools around the world. In particular, one of the groups that requires special attention is that composed of children who have a rare disease (RD), a highly heterogeneous group that needs an educational response adapted to their academic, health and social needs, eliminating any contextual barriers in order to facilitate a more inclusive environment. This chapter—based on a study carried out in Spain—is concerned with the need to give a voice to children and adolescents with RD and their families to ensure good inclusive practices for their schooling based on their own experiences and opinions. What emerges from the results, unexpectedly, at different times and from different voices, is that the term “association” is central to this chapter, that is, its importance and role both for children and young people with RDs, and particularly for families. Following an analysis of the results, the study concludes that, due to the information they provide, RD associations are key to raising awareness about RDs in schools, particularly when it comes to promoting positive attitudes toward them among teachers and students. In short, in order to make progress in the educational inclusion of students with RDs, it is essential that the associations involved work together with the educational centers from a community perspective.

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Notes

  1. 1.

    EURORDIS is a non-governmental patient-driven alliance of patient organizations representing 932 rare disease patient organizations in 73 countries. It is the voice of 30 million people affected by rare diseases throughout Europe.

  2. 2.

    This is an Integrated project funded by the European Commission within the Sixth Research Framework Program, priority 7. For more information, see https://www.schooleducationgateway.eu/files/esl/downloads/13_INCLUD-ED_Book_on_SEA.pdf.

  3. 3.

    https://rarediseases.org/.

  4. 4.

    This is a non-governmental patient-driven alliance of patient organizations representing 932 rare disease patient organizations in 73 countries. It is the voice of 30 million people affected by rare diseases throughout Europe. https://www.eurordis.org/es/quienes-somos.

  5. 5.

    The Spanish Federation of Rare Diseases (FEDER) was created in 1999 with the purpose of serving as the main voice of more than three million people living with some of these diseases in Spain. It is made up of non-profit organizations from any field, the aims of which include helping and promoting those affected by rare diseases http://www.horadeayudar.org/ongs/feder/.

  6. 6.

    https://enfermedades-raras.org/index.php/actualidad/12104-trasladamos-a-pedro-s%C3%A1nchez-su-objetivo-de-integrar-las-enfermedades-raras-en-la-agenda-2030.

  7. 7.

    The participants of this study are members of around 20 RD associations, organizations or bodies in Spain that are dependent on FEDER.

    CREER_ Centro de Referencia Estatal de Atención a Personas con Enfermedades Raras y sus Familias (CyL); ABAIMAR_ Asociación Balear de Niños con Enfermedades Raras and AEDM_ Asociación de Mastocitosis (IB); Berritxuak and ASEBI_ Asociación Bizkaia Elkartea Espina Bífida e Hidrocefalia (PV); D´GENES, ASSIDO_Asociación para personas con síndrome de Down y AMDIB_ Asociación Murciana de Disfagia Infantil y Botón Gástrico (Murcia); GERNA (NA); FMF_ asociación de enfermos de Fiebre Mediterránea Familiar y Síndromes Autoinflamatorios (CV); Asociación Española del Síndrome de Williams, AEPMI_Asociación de Enfermos de Patologías Mitocondriales; Asociación Síndrome de Sjögren and Fundación Menudos Corazones (Madrid); ASIC_ Asociación Española de Ictiosis (VA); Fundación Alpe Acondroplasia (Asturias); Asociación Síndrome de Williams de Cantabria (Santander).

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  1. University of the Basque Country, Leioa, Spain

    Zuriñe Gaintza & Leire Darretxe

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  1. Zuriñe Gaintza
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  2. Leire Darretxe
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Correspondence to Zuriñe Gaintza .

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  1. School of Education,, The University of Adelaide,, Adelaide,, SA, Australia

    Christopher Boyle

  2. Monash University,, Clayton,, VIC, Australia

    Kelly-Ann Allen

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Gaintza, Z., Darretxe, L. (2023). An Inclusive Response to Students with Rare Diseases from a Community Perspective: The Importance of the Active Role of Associations. In: Boyle, C., Allen, KA. (eds) Research for Inclusive Quality Education. Sustainable Development Goals Series. Springer, Singapore. https://doi.org/10.1007/978-981-16-5908-9_12

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