AERSCYL, Association of rare diseases of Castilla y León

It was born in 2014 when a group of mothers of children with rare diseases, faced with a lack of resources, uncertainty, and desperation, decided to get together with the idea of creating a group, since there was no association of this type in the Community of Castilla. and León, nor in Salamanca. With the intention of seeking resources and alternatives to improve the quality of life of their children, make visible the existence of rare diseases and fight for their rights. From that idea and project AERSCYL emerged, of which more than 100 families are already part.

In the context of the SIVI Cluster, AERSCYL shows interest in collaboration to develop projects within the SIVI Ecosystem and training activities.

OUR PURPOSE

• VISION: To be a reference group in the framework of rare diseases by providing support, raising awareness and implementing innovative actions.
• MISSION: Help and support all people with rare diseases, welcoming them, defending them, protecting them and promoting the dignity of their rights before the different public and political powers. In order to achieve full social, health, educational and labor integration of those affected.
• VALUES: Innovation, transparency, responsibility, unity of teamwork and participation, quality, learning, efficiency and sustainability.

GOALS

• Support for those affected: care for the sick and their families.
• Visibility: awareness about the problems of RE, dissemination and information.
• Political Action: proactive coordination with all parties involved, from patients, administration, professionals, etc.
• Research and Services: with an eye toward improving the quality of life of patients.

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