#Pledge4RD ahead of the 2019 European elections

From 23 to 26 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.

To ensure that the 25 - 30 million people living with a rare disease in Europe and their families are not left behind and achieve their highest potential of health and well-being, we are calling on MEPs to #Pledge4RD.

 

Ask your MEP to #Pledge4RD

>> Why should your MEP care?

Because rare is common. Many people are affected by a rare disease or know someone who is.

Rare diseases affect 25-30 million people in the EU, nearly 5% of the EU population, or the population of Belgium and the Netherlands combined. This estimate only increases when considering the carers, families and friends who need to support their loved ones.

There are over 6,000 rare diseases. The reality is that most people know somebody that is affected by a rare disease, whether they realise it or not.

Now is the time to call on your returning MEP or a candidate MEP to pledge their support for rare diseases.

>> How can they #Pledge4RD? <<

  1. Download and print the #Pledge4RD sign.
  2. Post their photo on social media using #Pledge4RD #EUelections2019 and tagging @eurordis

 

See who has made the #Pledge4RD >>>

The #Pledge4RD to leave no one behind

To ensure that the 25 - 30 million people living with a rare disease in Europe and their families are not left behind and achieve their highest potential of health and well-being, MEPs can #Pledge4RD to support a new political framework that:

Read the full pledge leaflet

Click here to download the PDF (English) >>>

Click here to download the PDF (French) >>>

Click here to download the PDF (Italian) >>>

Click here to download the PDF (Czech) >>>

 

MEPs & candidates who have pledged

#Pledge4RD #EUelections2019

We thank MEPs and candidates who have already pledged for rare diseases.

See their pledges below:


Czech Republic
Kateřina KONECNA MEP, GUE/NL Pavel POC, Czech Social Democratic Party

Denmark
Eva BORCHORST MEJNERTZ, Radikale Venstre Christel SCHALDEMOSE MEP, S&D
Pernille WEISS, Konservativ Anton EBSEN, Radikale Venstre
Rikke LAURITSEN, Socialistisk Folkeparti Peter WESTERMANN, Socialistisk Folkeparti
Mette POULSEN, SD  

Finland
Sirpa PIETIKAÏNEN MEP, EPP  

France
Françoise GROSSETÊTE MEP, EPP  

Ireland
Brendan SMITH, Fianna Fáil Sheila NUNAN, Labour
Aisling MCNIFFE, Independent (group Families speak out)  

Italy
Mercedes BRESSO MEP, S&D Alessandra MUSSOLINI MEP, EP
Elisabetta GARDINI MEP, EPP Dario TAMBURRANO MEP, EFDD, Movimento 5 Stelle
Rosa D'AMATO MEP, EFDD, Movimento 5 Stelle Paola MACCHI, Movimento 5 Stelle
Enrico FARINA, Movimento 5 Stelle Paola TESTORI, +Europa
Benedetto DELLA VEDOVA, +Europa Daniela AIUTO, +Europa
Marcella GILARDONI, Movimento 5 Stelle Tizian BEGHIN, Movimento 5 Stelle
Donato FORCILLO, Movimento 5 Stelle Matias Eduardo DIAZ, Movimento 5 Stelle
Eleonora EVI, Movimento 5 Stelle  

Latvia
Sergejs AKULIČS, Latvijas Attīstībai  

Luxembourg
Gary DIDERICH, déi Lénk Anne DAEMS, Demokratesch Partei
Christian KMIOTEK, European Greens Charles GOERENS MEP, ALDE, Democratic Party
Loris MEYER, Democratic Party Isabel WISELER-SANTOS LIMA, CSV
Tilly METZ, MEP, Green Party Meris SEHOVIC, Green Party
  Antoni MONTSERRAT, Déi Lénk Mara MARTINS, Déi Lénk

Poland
Marek PLURA MEP, EPP  

Romania
Norica NICOLAI MEP, ALDE  

Slovenia
Tanja FAJON, MEP, S&D Igor ŠOLTES MEP, Greens/European Free Alliance

Spain
Juan Ignacio ZOIDO, Partido Popular  

 

 

 

Page created: 19/04/2019
Page last updated: 23/05/2019
 
 
La voix des patients atteints de maladies rares en EuropeEURORDIS Donnant la voix, à l'international, aux personnes vivant avec une maladie rareRare Disease International Pour rapprocher patients, familles et experts sur un forum modéré multilingue, où partager leurs expériences. RareConnect Le programme Rare Barometer est une initiative d’EURORDIS qui vise à réaliser des sondages pour transformer les expériences des patients de maladie rare en faits et chiffres à communiquer aux décideurs politiques.Rare Barometer Campagne internationale de sensibilisation organisée chaque année le dernier jour de février, la Journée Internationale des Maladies Rares est une initiative d'EURORDISRare Disease Day Participez au plus grand événement réunissant tous les acteurs des maladies rares en Europe lors de Conférence européenne bisannuelle sur les maladies rares et les médicaments orphelins (European Conference on Rare Diseases and Orphan Products, ou ECRD). L'ECRD est une initiative d'EURORDISEuropean Conference on Rare Diseases