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
 
 
La voce dei malati rari in EuropaEURORDIS Rare Diseases International, la voce internazionale dei malati rariRare Disease International RareConnect è un'iniziativa di EURORDIS che mette in contatto malati, famiglie ed esperti per condividere esperienze in un forum multilingua e moderato RareConnect Il Programma Rare Barometer è un’iniziativa di EURORDIS volta a condurre indagini con l’obiettivo di trasformare le esperienze delle persone affette da malattie rare in cifre e fatti che possono essere condivisi con i decisori politici.Rare Barometer La Giornata delle Malattie Rare, una campagna di sensibilizzazione internazionale che si svolge l'ultimo giorno di febbraio di ogni anno.Rare Disease Day La Conferenza Europea biennale sulle Malattie Rare è il più grande incontro di soggetti interessati al tema delle Malattie Rare in Europa. L'ECRD è un'iniziativa di EURORDISEuropean Conference on Rare Diseases