👉🏻 Somos la esperanza de 3 millones de personas con #enfermedadesraras 🍀 Representamos a 422 organizaciones de pacientes y a 1.546 patologías poco frecuentes

Core values

- The project aims to sensitize society to the reality of rare diseases, recognizing them as a social and health problem[3][5].
- It works to reduce the difficulties in accessing diagnosis and treatment, which are significant barriers for people with rare diseases[5].
- The initiative includes implementing codification for undiagnosed rare disorders, which helps in tracking and providing resources to affected individuals[5].
- By promoting earlier diagnosis and better access to treatment, the project improves the quality of life for patients and their families[2][5].
- It addresses the psycho-emotional disorders, social integration problems, and economic costs associated with rare diseases[1].
- The project encourages policy changes and international mobilization to address health inequities faced by the rare disease community[2][5].
- It fosters research interaction and knowledge sharing to accelerate the transfer of research findings into clinical practice[5].
- The initiative involves a wide range of stakeholders, including professionals, investigators, administrators, and the general public, to create a supportive community[3].
- It enhances social capital by building a network of support and awareness, which is crucial for the well-being of individuals and communities[4].