#Pledge4RD leaflet

In May 2019, citizens across the EU will vote for the Members of the European Parliament (MEPs) they want to represent them for the next five years.
In March 2019, EURORDIS launched a pledge for rare diseases. Now is the time to call on your returning MEP or a candidate MEP to pledge their support for rare diseases and to support a new political framework that:

  • Enables all people living with a rare disease to receive an accurate diagnosis and appropriate care within one year of coming to medical attention
  • Supports holistic care and social systems that are inclusive of people living with a rare disease, throughout their lives
  • Seizes opportunities in science and innovation that embody hope for people living with rare diseases and their carers and can change their lives

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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