Fundación Jesús Serra collaborates with the Spanish Rare Diseases Framework (Feder) in the Educar en Red programme, a programme aimed at students, teachers and families whose aim is to mainstream students with rare diseases, and/or in the process of diagnosis, during the school period. The Educar en Red programme aims to provide information on the mental and physical health of students with rare diseases, with a view to learning about their needs in order to implement resources and adjustments for their comprehensive treatment, as well as improving life and coexistence in the school context, and providing the appropriate tools for teachers.
Although rare diseases may be individually rare, they are collectively common, and determining the specific educational needs and characteristics for these patients is a complex task. This is why Feder is promoting research in this field.
Students with a rare disease, or in the process of diagnosis, live with complex needs that affect multiple aspects of their teaching and learning process, such as irregular attendance and performance, difficulties in participation or in the development of personal autonomy, psycho-emotional impact, and invisible effects that give rise to organic disability. In this context, Feder has prepared the guide "Educar en Red: resources for inclusive education, "an educational guide aimed at teachers, which includes, among other matters, a theoretical approach to inclusive education, an exhibition of the projects of associations, and useful resources to promote inclusive education.
Since our foundation in 1999, we have grown from seven to 360 entities, with 7 delegations and 12 area coordination centres, and with a presence throughout Spain. We currently have a personalised advisory service, we offer both in-person and online training, and we provide resources for entity management. We also encourage activity in the field of associations, helping to create them and supporting them in their growth.