On the occasion of the XVII European Patients' Rights Day, Active Citizenship Network organized last 26 of April 2023 a conference at the European Parliament in Brussels to reflect on Advanced Therapy Medicinal Products in Europe, together with representatives of citizens and patients’ advocacy groups, European and national Institutions, the World Health Organisation, the private sector, experts and practitioners in the field of ATMPs. The conference was organised with the support of the MEPs Interest Group "European Patients' Rights & Cross-Border Healthcare" and the TRANSFORM MEP Interest Group.

EUROPEAN PATIENTS’ RIGHTS DAY 2023

Advanced Therapy Medicinal Products in Europe: combining sustainability, innovation and respect for patients' rights

26 April 2023 | 15:00 – 17:00 CEST
Room ASP 3H1 | European Parliament, Brussels

PROGRAMME

Moderator: Mariam Zaidi – journalist

15:00 – 15:20 Opening remarks

• Brando Benifei, Member of the European Parliament - Group of the Progressive Alliance of Socialists and Democrats (S&D), Italy - Co-Chair of the MEPs Interest Group on "European Patients' Rights and Cross-Border Healthcare"
• Anna Lisa Mandorino, Secretary General – Cittadinanzattiva APS and member of the National Ethics Committee for clinical trials related to ATMPs at AIFA (Italian Medicines Agency)
• Stella Kyriakides, European Commissioner for Health and Food Safety (video message)
• Silvio Brusaferro, President – Istituto Superiore di Sanità (Italian National Institute of Health)

15:20 – 16:00 Roundtable discussion on innovation

• Eleni Antoniou, Senior International Affairs Officer - Thalassemia International Federation
• Thanos Kosmidis, Co-Founder and Chief Executive Officer – CareAcross and member of All.Can International
• Thomas Allvin, Executive Director Strategy and Healthcare Systems - European Federation of Pharmaceutical Industries and Associations (EFPIA)
• Paolo Morgese, Head of Public Affairs, Europe - Alliance for Regenerative Medicine (ARM)

16:00 – 16:10 Case history

• Stefania Bettinelli, President - Le ali di Camilla APS

16:10 – 16:50 Roundtable discussion on access

• Jo De Cock, Advisor - Novel Medicines Platform - World Health Organization (WHO) Regional Office for Europe
• Alessandra Renieri, Genetics full professor - University of Siena and member of the Committee for Advanced Therapies (CAT) - European Medicines Agency's (EMA)
• Francesco Saverio Mennini, Professor of Health Economics and Microeconomics - Faculty of Economics - University of Rome “Tor Vergata”; President – SiHTA (Italian Society of Health Technology Assessment); Expert in health economics to the Italian Minister of Health
• Attila Német, Vice President - Hungarian Federation of People with Rare and Congenital Diseases Network (HUFERDIS - RIROSZ)

16:50 - 17:00 Final remarks

• Tomislav Sokol, Member of the European Parliament - Group of the European People’s Party (EPP), Croatia - member of the TRANSFORM MEP Interest Group
• Domenica Taruscio, MD, Former Director - National Centre for Rare Diseases, Italian National Institute of Health; Co-Founder - Undiagnosed Diseases Network International (UDNI); International Rare Diseases Research Consortium (IRDiRC) FCC Member
• Mariano Votta, Responsible for EU Affairs – Cittadinanzattiva APS-Active Citizenship Network

The conference is organised with the support of the MEPs Interest Group "European Patients' Rights & Cross-Border Healthcare" and the TRANSFORM MEP Interest Group.

The conference is realized thanks to the unconditional support of:

Media Partners:

To read the concept note of the 17th European Patients' Rights Day, click here. To know more, click here.

To download the speakers' list, click here

To watch the photo gallery on Active Citizenship Network FB page, click here

To read the press release, click here (EN - IT)

Watch the video interviews realized by the journalist Mariam Zaidi on occasion of the European Patients’ Rights Day and focused on ATMPs.

Clippings, Interviews, Web & Press Articles:

• FONDAZIONE COMEL (June 5th, 2023): Parlamento Europeo: la Giornata europea dei diritti del malato (IT)

• TrendSanità (3 May, 2023): Terapie avanzate: è tempo di considerarle un investimento anziché un costo (IT)

• REDATTORE SOCIALE (26 Apr. 2023): Cittadinanzattiva, al via la XVII Giornata europea dei diritti del malato (IT)

• HELP CONSUMATORI (26 Apr. 2023): Terapie avanzate, oggi al centro della Giornata europea dei diritti del malato (IT)

• FEDERFARMA (26 Apr. 2023): Disponibili in Europa 20 terapie avanzate, 6 contro i tumori Al Parlamento Europeo la Giornata europea dei diritti del malato (IT)

• SANITÀ33 (26 Apr. 2023): Terapie avanzate in Ue tra sostenibilità e innovazione. Evento al Parlamento europeo (IT)

• AGENPARL (26 Apr. 2023): La XVII Giornata europea dei diritti del malato oggi al Parlamento Europeo: Terapie Avanzate in Europa tra sostenibilità, innovazione e diritti dei pazienti (IT)

• Programma Mattone Internazionale Salute – ProMIS (20 Apr. 2023): Giornata Europea dei Diritti del Malato, convegno del Parlamento Europeo per l’occasione (IT)

• HEALTH EUROPA (24 Apr, 2023): European Patients’ Rights Day and ATMPs: Combining sustainability, innovation and respect for patients’ rights

• TrendSanità (24 Apr, 2023): Terapie Avanzate in Europa tra sostenibilità, innovazione e diritti dei pazienti (IT)

• THE EUROPEAN FH PATIENT NETWORK (April 18, 2023): European Patients’ Right Day

• HEALTH EUROPA QUARTERLY (31st Jan. 2023, issue 24, pag. 124-127): The value of investing in Advanced Therapy Medicinal Products

• HEALTH EUROPA (5th January 2023): The value of investing in Advanced Therapy Medicinal Products

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(Page updated on May 2023)