The challenges of life-course vaccination to enhance public health protection in Europe: a multi-stakeholder approach.

Slide IG 28 02

28th  February 2018
ASP A1E201
11.00 -13.00
European Parliament 

Draft Programme


10:30 Registration & Accreditation
Meeting point: Info Point on the left of Altiero Spinelli (ASP) entrance from Place du Luxembourg

Moderator:  Suzanne Wait, Health Policy Partnership


Cross-border healthcare and centres of excellence to enhance patients’ rights: access, information and innovation

 Slide IG 27 02

27 February 2018, 15.00-17.00
Room (ASP 3H1)
European Parliament, Brussels


14:30 – 15:00 Registration & Accreditation
Meeting point: Altiero Spinelli (ASP) entrance from Place du Luxembourg

Chair: Stephen McMahon – Irish Patients’ Associations


15:00 – 15:15 Welcome address and keynote presentation

  • MEP Patrizia Toia (Italy) Group of the Progressive Alliance of Socialists and Democrats in the European Parliament
  • Mariano Votta – Director of Active Citizenship Network


15:15 – 15:50 ERNs and centres of excellence: a challenge beyond borders

  • Nora Kajtar – Policy Officer, European Commission - Cross-Border Healthcare & eHealth Unit
  • Maurizio Scarpa – Coordinator European Reference Network for Hereditary Metabolic Diseases (MetabERN), Chair of the ERN Coordinators Working Group
  • Luca Sangiorgi –  Coordinator, European Reference Network on Rare Bone Diseases (ERN BOND)


15:50 – 16:45 Experiences & perspective concerning cross-border healthcare. Proposals on how to contribute to improving patients’ access and information

  • Beatrice De Schepper – European Huntington Association - Patient representative in the ERN RND (Rare Neurological Diseases) 
  • Gábor Pogány President of Hungarian Rare Diseases Federation, member of the EURORDIS Patient Advocacy Group (E-PAG) on ERNs
  • Jasna Karacic – Croatian Association for the Promotion of Patients' Rights
  • Pascal Garel – European Hospital and Healthcare Federation (HOPE)
  • Giuseppe Banfi - Scientific Director Istituto Ortopedico Galeazzi
  • Scott Pescatore – General Manager for Rare Disease EU, Novartis Oncology
  • Brian Kennedy – Global Alliance for Patient Access


16:45 – 17:00 Debate

The support of Active Citizensip Network on value added medicines

21 NOVEMBER 2017


All we are aware that sustainability would be achieved if we enhance the cost-efficiency of our healthcare systems. Value added medicines provide a responsible answer to some of the challenges that patients and payers are facing and can improve budget efficiency, taking also into consideration that their benefits apply to a large variety of therapeutic areas, including rare diseases. Also for this reason, Active Citizenship Network thanks Medicines For Europe for having involved civic and patient organisations to debate on a topic - value added medicines  - which is still far from being considered from the wide public. In fact, last 21 of November 2017, Active Citizenship Network officially supported, together with European Federation of Neurological Associations and European Huntington Association, the “My Voice Matters!” exhibition at EU Parliament, promoted by Medicine for Europe-Value Added Medicines Group.



 24  January 2018
10:00 - 12:00
ASP A3F38310,  European Parliament, Brussels




Short description of the project
On the 13th and 14th of October, French Presidency of the Council of the European Union  organized the "Europe for Patients" which some 400 participant (experts, health professionals, patients' associations, European Commission and Member State representatives and MEPs etc.). During the conference  ACN presented the European Patients' Rights Charter and the European Patients' Rights Day as examples of what citizens acting together across Europe are doing to promote patients' rights at the EU and national level and launched the appeal "let's make it official".


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