FIRST RARE DISEASE AWARENESS WEEK AT YAGO SCHOOL

Ms. Maria Luisa Valentin together with our Counselling & SEN Department led our first schoolwide conference on rare diseases. Although “World Rare Disease Day” takes place on the last day of February, the 29th this year, we chose the week of February 3rd to 7th to work with Yago School students on the acceptance of differences and respect for diversity.

At Yago School, it is essential that pupils learn to respect and accept differences. This is what will truly make them special and foment much-needed societal integration in a natural way.

We must be aware that this is a reality that affects a large number of people and that it is sometimes invisible. It’s everyone’s responsibility to try to get to know and be able to raise awareness of these situations to as many people as possible.

In order to do this, we created a series of activities adapted to each educational stage in which students could learn and reflect about differences, starting from knowing what a rare disease is.

Rare diseases (RD) are those that have a low prevalence in the population. To be considered rare, each specific disease can only affect a limited number of people and, more specifically, when it affects less than 5 out of 10,000 inhabitants. However, rare diseases affect a large number of people, as according to the World Health Organisation (WHO), there are about 7,000 rare diseases affecting 7% of the world’s population. In total, it is estimated that there are more than 3 million people with rare diseases in Spain alone.

Our students also learned that there is an organisation at a national level that recognises these diseases and does very important outreach work. This organization is called FEDER: The Spanish Federation of Rare Diseases.

Children in P1 and P2 worked on this topic through the reading of books such as “El Cazo Lorenzo”, “¡Qué valiente!”, “Orejas de Mariposa”, “Quisiera ser un Coche”, “Planeta Willy”, and “La Cigüeña Añil”, where the value of difference and the importance of putting oneself in the others’ shoes is highlighted.

In Primary 3, 4 and 5 classes, different videos were projected to make students reflect on their daily lives. “The Shorn Sheep”, “Story of a Hedgehog”, “Marcela”, and “Ian” left us with messages, such as the need to have good self-esteem, as well as the mistake of believing that a person’s value is only found in physical appearance. They also highlight the importance and power of people’s inner beauty. Through the short films, students realized that people have traits that make them different, but that these traits should be a source of richness, integration and acceptance.

 

Primary 6 pupils were divided into groups to explore a rare diseases in a cooperative way as part of the Spanish Language subject. This was also an interesting entrepreneurial activity where students created an association to help children from other grades to learn more about their chosen rare diseases.  This was a comprehensive and global challenge where students had to meet FEDER’s objectives: information (knowing what rare diseases are), awareness, and proposals to raise money for research.

Each of the 12 groups researched a different rare disease and set up a stand with posters and leaflets they created for the occasion. The diseases were: Koolen de Vries, Cystic Fibrosis, Jacobsen, Butterfly Skin, Callus Agenesis, Williams Syndrome, Prader Willi, Angelman, X-Fragil, Moebius Syndrome, Amyotrophic Lateral Sclerosis (ALS) and Ondine Syndrome.

The Rare Disease Fair and the four testimonies offered by two members of our staff with children with rare diseases, one a Cystic Fibrosis patient, and a therapist of Secondary and High School, put the finishing touch to a great week of learning.

The message got through to our children, as they empathised with diversity and with the difficulties that people with these types of diseases struggle with everyday, making it was a great experience for everyone.

 

 

WE CAN’T ALWAYS CHOOSE HOW WE WANT TO BE DIFFERENT

 

 

 

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