A couple of days ago we talked about what it means to be an inclusive school, and today we bring you an example of an effort to achieve this inclusion. "Rare diseases go to school" is the name of an inclusive education program for schools which aims to favor the inclusion of children with rare diseases in their educational environment.
The program has been developed by the Spanish Federation of Rare Diseases and it is another step to eliminate the borders of isolation that these children often suffer. It has been carried out for two school courses, and new actions are planned for the coming years.
The problem experienced by families with rare diseases in their educational environment is very varied, both due to ignorance in the Administrations (lack of specialized human and organizational resources, lack of training for teachers ...), and lack of knowledge among teachers.
The consequences between students with rare diseases is that they are not properly attended and are not included in a normalized way in society, their rights to equality and education being undermined.
The program has the volunteering of more than 200 associations of rare diseases and their delegations, grouped in the Spanish Federation of Rare Diseases. The participating educational centers and the teaching staff carry out a sensitization activity in class and expand their knowledge of rare diseases.
It is a project that seeks a school for all, enriched by diversity and where there is a climate of equity, respect and understanding for differences. Hopefully it will continue to be successful during the next courses, because it is a desirable goal in any school (and in any society).
Definitely, the program "Rare diseases go to school" aims to encourage respect for differences and normalize the image of infrequent diseases among children, something necessary for the full fulfillment of children's rights.
Official Site | Rare diseases in babies and more | "It's about capacity", a successful campaign to promote the inclusion of disabled children, World Rare Disease Day: removing borders from isolation
