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)


  • 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).

Page created: 09/05/2014
Page last updated: 28/06/2016
The voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseasesRare Disease International Bringing together patients, families and experts to share experiences in a moderated multi-language forum. RareConnect The Rare Barometer Programme is a EURORDIS initiative that carries out surveys to transform rare disease patients' experiences into figures and facts that can be shared with decision-makers.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 Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiativeEuropean Conference on Rare Diseases