Rare Diseases in Schools. Support Guide

Yolanda Ahedo
On the left margin of the cover, on a white background, the names of rare diseases are written. On the right margin of the cover, on a green background, the title of the publication and below it a traditional blackboard with the words: know, learn, understand. At the base of the right margin, institutional logos Ministry of Social Rights and Agenda 2030, Imserso, Sustainable Development Goals and Believe).

Little is known about Rare Diseases (RD) at health, social and educational level. Different studies highlight the general  ack of information within the educational community amongst teachers, carers, classmates etc.

Students with rare diseases are a very diverse group. When we talk about rare diseases, we are faced with a wide range of disorders and symptoms that vary, not only from one disease to another, but also within the same disease.

This guide to Rare Diseases is written for the educational community and aims to provide information about RD in general and offer support, resources, materials, strategies, etc. in a bid to improve the quality of life of pupils with an uncommon disease.

Pedagogue and teachers of the State Reference Center for Care of People with Rare Diseases and their Families (Creer), as education professionals we want to contribute with this publication to make access, participation and success of all students in the system a reality. education as a guarantee of inclusion and social participation to be able to create more inclusive schools making other realities visible.

It can be accessed at the following link: