The Spanish Federation of Rare Diseases (FEDER) maintains a constant and determined work towards the inclusion of people with Rare Diseases. On this occasion they have promoted a educational campaign in 50 Spanish schoolsI hand them 'Federito, the 4 leaf clover'.
'ER goes to school with Federito' It is a great advance for the normalization of children with rare diseases in their school stage. The difference is intended to be simply a quality and not a condition that limits people's lives. Because the abilities of people and children with rare diseases are unlimited. His strength, his courage and his ability to fight is the best test. The action is being possible thanks to the support of Johnson & Johnson and Janssen through their Social Responsibility programs. And it is specified in an educational project that Federito is the protagonist, with the aim that all students are involved in the objective of favoring the inclusion of children with rare diseases in their educational environment.
More specifically, it is planned to carry out a Campaign for education in values at national level that seeks to raise awareness of the entire educational community in more than 50 schools throughout Spain. “The ER go to school with Federito” integrates the training of volunteers, a workshop of recreational / educational character in the classroom, activities with families and a didactic unit through which teachers can work on diversity in the ER from Main areas of the curriculum. The goal is to benefit 3,000 children through the project.
Alba Ancochea is a psychologist, and coordinates this project, this professional tells us: our challenge is “to ensure that children and adults with rare diseases are part of society, with equal rights in front of any other person. To achieve this goal, we are aware that a change in attitudes is necessary that must arise from early childhood in the school context, promoting a school for all that is enriched by diversity and where you breathe a climate of equity, respect and understanding for differences. ”
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The project has already begun to be developed in various schools in Madrid. The workshops are taught entirely by volunteers previously trained by the Federation. Sandra Beltrán is a mother with a child with Alaguille Syndrome and is also a project volunteer. During this month he is going to several centers to give the workshop and wanted to share his testimony:
I felt that children are closer to what is natural. Children show more interest in each other, they are closer to compassion and integration. They already care about the health of others. It is we adults who exclude with our judgments those who do not fit into them
In addition, from his point of view of mother Beltrán states that 'projects like these are the ones that are worth financing because they are the ones that build awareness and health. Many times, what ends up being decisive in the development of a child is not the disease itself, but how we all treat it for having it. As long as there is inclusion and integration, acceptance and collaboration for these children they will have more opportunity to live. '
With a duration of three years, the activity aims to create a network of volunteer trainers and solidarity colleges who wish to include in their work plan the Teaching Unit of "Rare diseases go to school with Federito". The second phase of the project will increase the number of schools and schools benefited.
In Peques and Más we already know the story of 'La historia de Federito, the 4 leaf clover' on which this initiative focuses. And we congratulate FEDER for developing this ambitious project that will contribute to the normalization of RE in educational settings.
Images | ERDF More information | ERDF In Peques and More | The Spanish Federation of Rare Diseases (Feder) has created an application for smarthphones, Today is celebrated the World Day of Rare Diseases with the campaign "Get Vaccinated Against Indifference"
