Making Patients voice matter: the role of value added medicines EU workshop co-organized by Medicines for Europe and Active Citizenship Network


On November 20th, 2018, in line with their increasing cooperation in the field of patients' rights, Cittadinanzattiva Onlus, through its international branch the Active Citizenship Network, and Medicine and for Europe, through its Value Added Medicines Group, co-organized an European workshop in Brussels on value added medicines. Starting from the Patients’ Right of Access, the Patients’ Right to Innovation and the Patients’ Right to Personalized Treatment, the initiative provided a selected number of leaders of patients’ organizations and advocacy groups across Europe with an updated overview about value added medicines and facilitated an exchange of views on key policy developments linked to them.


Making visible the invisible on Chronic Pain: sharing successful experiences from Spain to Europe


Pain Euro-Mediterranean Coalition Annual Meeting 2018

6 May 2018 from 09:00 - 11:00
Location: Hotel Occidental Menorca


08:30 Registration & Accreditation

Alfonso Vidal Marcos, Jefe de servicio anestesiología reanimación y director de la unidad del dolor Hospital Quirón salud Sur Alcorcón Madrid. Profesor asociado de anestesióloga de la universidad complutense de Madrid


Active Citizens in Europe advocate for vaccination

Action plan to improve the awareness on vaccine benefit across Europe

Active Citizenship Network strongly believe that vaccination is a right and an extraordinary tool of public health, which must be known, valued, spread and used in the interests of individuals and the community. However, it is necessary to work and contribute to a proper vaccine culture. In addition, it is necessary to ensure rigor and transparency, in order to recover confidence in science.

For this reasons, after the successful event “The challenges of life-course vaccination to enhance public health protection in Europe: a multi-stakeholder approach", ACN will organize a new public event to reflect, in a multi-stakeholder environment, on the commitment of EU Institutions to the topic and to produce a proposal of positioning to strengthen the cooperation among all relevant actors. It would contribute to a more integrated policies cooperation to the theme, avoiding any silos approach.


From local to global: promoting societal impact of pain “SINE DOLORE WORLD PARK”

sine dolore persone

From local to global: promoting societal impact of pain

26 April 2018
11.00 - 12.30
Room “Loyola de Palacio” (JAN 6Q1), European Parliament, Brussels


The event was hosted by the MEP Rosa Estaràs Ferragut and organized by Sine Dolore European Pain Foundation in partnership with Active Citizenship Network.
The aim of the initiative was to present to the EU Institutions and relevant stakeholders the unique experience of the SINE DOLORE WORLD PARK, the first theme park in the world against pain and for the quality of life. During the event were shared and discussed other awareness experiences, gathered across Europe, and their contribution to promote a societal impact of pain.


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



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