Policy Action Group (PAG)

The EURORDIS Policy Action Group (PAG) encompasses the 8 patients’ representatives who are nominated on the Commission Experts Group on Rare Diseases (former EUCERD – European Committee of Experts on Rare Diseases) as well as two observers from EURORDIS.

EURORDIS Policy Action GroupThe Experts Group on Rare Diseases is involved in shaping health policies on rare diseases for the European Commission and EU Member States. The Group notably assists the European Commission “in the drawing up of legal instruments and policy documents, including guidelines and recommendations”.

The patients’ representatives represent different entities but they are all members of EURORDIS and work collectively on voicing rare disease patients’ needs and expectations in the Experts Group of the European Commission. These patient representatives have been nominated by the EC based on their longstanding advocacy track records. Altogether, they represent main rare disease groups as well as all parts of Europe: 

The Network of European Federations of rare diseases
 

  • Jan Geissler, Vice President of the Leukemia Patient Advocates Foundation
  • Amanda Bok, Chief Executive Officer of the European Haemophilia Consortium
     

The Network of National Alliances of rare disease patients' organisations of rare diseases
 

  • Dorica Dan, Chair of RONARD, the Romanian National Alliance for Rare Diseases
  • Lene Jensen, Chief Executive Officer of Rare Disorders Denmark
     

EGAN - European Genetic Alliances' Network
 

  • Alastair Kent, Director of the Genetic Alliance UK and Chair of Rare Disease UK
  • Flavio Minelli, co-founder and Board member of the Italian Ichthyosis Union (UNITI)
     

EURORDIS
 

  • Yann Le Cam, Chief Executive Officer, EURORDIS
  • Christoph Nachtigaeller, President of ACHSE, the German Alliance for Rare Diseases
     

Observers
 

  • Valentina Bottarelli, European Public Affairs Director
  • Ariane Weinman, EURORDIS European Public Affairs Manager

 

The PAG communicates regularly via emails. They prepare together their participation in the meetings of the Experts Group and benefit from the support of staff members as well as of the extended network of EURORDIS when seeking advice on some specific issues (e.g. registries, newborn screening, centres of expertise to name a few).

Page created: 09/05/2014
Page last updated: 28/06/2016
 
 
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