#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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A voz das pessoas com doenças raras na EuropaEURORDIS A voz internacional das pessoas com doenças raras, Rare Diseases InternacionalRare Disease International Reúne doentes, famílias e especialistas para partilhar experiências num fórum multilinguístico. RareConnect O programa Rare Barometer é uma iniciativa da EURORDIS para a realização de inquéritos para transformar a experiência das pessoas com doenças raras em números e factos que podem ser partilhados com os responsáveis pela tomada de decisões.Rare Barometer An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiativeRare Disease Day Adira ao maior encontro europeu das partes interessadas no âmbito das doenças raras na Conferência Bienal Europeia sobre Doenças Raras e Produtos Órfãos. A ECRD é uma iniciativa da EURORDISEuropean Conference on Rare Diseases