Health strategy

Eurordis focused on key objectives and proposals in the area of rare diseases to be included within the new strategic framework to guide the Commission’s future work in the field of Public Health. This contribution pertains to the Commission’s Discussion Document for a Health Strategy, “Health in Europe: A Strategic Approach”.

 

Objectives include consolidating the position of rare diseases as a priority in the political agenda of European decision-makers; fighting the impact of rare diseases on the lives of patients by improving access to diagnosis, information, treatment and care, through exchange of good practices and patient support, and via social and educational services; and promoting basic and clinical research to develop medicinal products and therapies. Proposals include a Commission Communication and Council Recommendations on rare diseases, an EU High Level Group on rare diseases, a Community Agency for Rare Diseases and, for a global approach, an International Coordination for Orphan Drugs and Rare Diseases (ICORD).

 
 
La voz de los pacientes de enfermedades raras en EuropaEURORDIS La voz internacional de las personas que tienen enfermedades rarasRare Disease International Reuniendo a pacientes, familiares y expertos para compartir experiencias en un foro moderado en distintos idiomas. RareConnect El Programa Rare Barometer es una iniciativa de EURORDIS que realiza encuestas para transformar las experiencias de los pacientes con enfermedades raras en cifras que puedan compartirse con los responsables políticos.Rare Barometer Una campaña internacional de sensibilización que se celebra todos los años el último día de febrero, El Día de las Enfermedades Raras es una iniciativa de EURORDISRare Disease Day Únete al mayor grupo de partes interesadas en toda Europa, en la Conferencia Europea sobre Enfermedades Raras y Medicamentos Huérfanos que se celebra cada dos años. ECRD es una iniciativa de EURORDISEuropean Conference on Rare Diseases