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