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Monthly Newsletter edited by Cittadinanzattiva-Active Citizenship Network
Civic Activism | Patients' Rights | Consumers' Rights | Support ACN
Year 6th, number 54 - January 2018

Upcoming events of the MEPs Interest Group “European Patients' Rights and Cross-border Healthcare”: Join us!


Promoted by Active Citizenship Network, two new events of the MEPs Interest Group “European Patients' Rights and Cross-border Healthcare” will be carried out in February 2018 on major issues and challenges related to cross border care & patients' rights in Europe: to improve access to the ERNs, and to increase the vaccine coverage.

Save the dates and register! For both event the deadline to register is 15 of February.

27 February 2018
Hosted by the MEP Patrizia Toia, Active Citizenship Network is organizing in the European Parliament on the 27 of February from 15.00 to 17:00 (Room ASP 3H1) the meeting titled:

"Cross-border healthcare and centers of excellence to enhance patients' rights: 
access, information and innovation"

CLICK HERE to participate by 15th February  2018 (registration is mandatory)

The initiative represents the final event of the campaigning to raise awareness on cross-border healthcare titled “Patients’ rights have no borders”. After two years of activities across Europe, Active Citizenship Network has decided to develop it further and plan a widespread activity focused on the European Reference Networks and on patients’ rights with regard to rare or complex disease. The meeting will offer an open debate between civic and patient associations from different Member States, experts, Institutional representatives from the European Parliament and the European Commission, Coordinators of ERNs and several stakeholders at EU level. Read more

28 February 2018

Hosted by the MEP David Borrelli, Active Citizenship Network is organizing in the European Parliament on 28 of February  from 11:00 to 13:00 (Room ASP 7H1) the meeting titled:

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

CLICK HERE to participate by 15th February 2018 (registration is mandatory)

Vaccination is one of the most important public health tools of the 20th century, however, vaccination programs are facing considerable challenges, such as a decline in vaccination coverage in some countries, the increasing cost of new vaccines and shortages in supply. In addition, misconceptions about vaccination can further shift the public focus from the individual and collective benefits of vaccination to increased distrust and fear of possible side effects. In this challenging and complex environment, there is a clear added value in involving all the stakeholders within the EU and in working with global partners to ensure the sustainability and effectiveness of vaccination programs.
The initiative is in line with our multi annual commitment on the topic at National level and our involved – at EU level - in the Technical Advisory Group of the ECDC-European Centre for Disease Prevention and Control. Read more


"Making Visible The Invisible On Headache Pain: Sharing Successful Experiences Across Europe"
All the presentation of the event realized last 24th of January are ready for the download.
See the picture visit our FB page
To know more about the initiative, click here

MTeresaFL_FotoMaria Teresa Flor de Lima
Physician specialized in Anesthesiology and Pain Medicine with the master in Palliative Care. Consultant of the Regional Health Directorate of the Government of Azores (Portugal) for pain strategies from 2009 to 2020; Coordinator of the Regional Pain Control Program. Coordinator of the Scientific Council of Chronic Pain Patients Association of Azores (member of Pain Alliance Europe). Member of International Association for the Study of Pain (IASP) and the SIGs on «Pain in the Older Persons» and «Pain Education»; Bioethics Research Group, Azorean Center; European Union of Medical Specialists. Download the presentation.

MTeresaFL_FotoRaquel Gouveia
Graduated in Medicine by the Lisbon Faculty of Medicine,  Neuroophthalmology Master Degree, PhD in Neurology -  Headache; researcher in Headache of the Institute of Molecular Medicine, Lisbon Faculty of Medicine (2000-2015); Learning Health – Luz Saúde (Since 2015). She is Neurology Consultant in Headache Outpatient Clinic of Hospital de Santa Maria, Lisbon (since 2006) and Coordinator of the Hospital da Luz Headache Center since 2012; Head of the Hospital da Luz Neurology Department since 2016. She is member of the Portuguese Headache Society since 1997, being part of the Scientific Committee since 2015; Member of the Headache Panel of the European Headache Federation. Lifting-the-Burden Global Campaign Committee Member. Download the presentation.

MTeresaFL_FotoAnna Graca
Anna Graca is a programme and policy officer at the European Commission, in the Directorate-General for Research and Innovation where she is managing a portfolio of EU funded research projects on pain. She has a PhD in Neuroscience and Ophthalmology from University College London. Download the presentation.

MTeresaFL_FotoKoen Paemeleire - European Headache Federation (EHF)
He works as a consultant neurologist at the Department of Neurology, Ghent University Hospital, Belgium since 2004, where he runs a specialized headache clinic. He was also appointed part-time Senior Lecturer in Neurophysiology at the Department of Basic Medical Sciences, Faculty of Medicine and Health Sciences, Ghent University, Belgium. He is currently Treasurer of the European Headache Federation and Associate Editor of the Journal of Headache and Pain. His research focuses on the management of headache, neurostimulation techniques and migraine neurobiology. He is involved in multiple clinical trials testing CGRP (receptor) antibodies in the prevention of migraine and cluster headache. Download the presentation.

MTeresaFL_FotoMEP Sofia Ribeiro
Member of the European Parliament, integrating the Portuguese Delegation of the European Popular Party (EPP). She is from the Azores, a Portuguese outermost region. She is member of the Employment and Social Affairs Committee, and substitute on Agriculture Committee. She also is member of the Delegation for the Relations with United States and substitute for the Delegation for the Relations with Canada. She has a degree in Mathematics from the University of the Azores, and a Graduate Diploma in School Administration. Sofia Ribeiro is a teacher and, until the election, she was the President of the Azorean Democratic Union of Teachers of Azorean Union of Workers (UGT-Açores), member of the Secretariat of National Federation of Education and member of the Regional Council of Strategic Dialogue. Download the keynote speech

MTeresaFL_FotoPaolo Rossi
Chief of the Headache Clinic INI Grottaferrata and Alleanza Cefalalgici Cluster. Vice-President of European Headache Alliance. Professor of Clinical Neurology and Psychiatry at Nursing School University Tor Vergata Roma (Italy). Research Associate at University Centre for Adaptive Disorders and Headache (UCADH), Pavia (Italy). Download the presentation.

MTeresaFL_FotoElena Ruiz de la Torre
She is actually President of the European Headache Alliance EHA. She has been vice-president since 2013 till February 2016 and previously she was treasurer and member of the board since the foundation. She is also President and founder of the Spanish Patient’s Organization Asociación Española de Pacientes con Cefalea (AEPAC) since 2005. AEPAC is a non profit organization, with social and public interest as it has been declared by the Ministry of Internal Affairs of Spain. Recently she has become responsible of the International affairs of the Spanish board of the National Platform of Chronic Diseases Patient’s Organizations (POP).

MTeresaFL_FotoCristina Tassorelli
MD, PhD, fully trained neurologist, She is a Full Professor of Neurology at the Dept. of Brain and Behavioral Sciences of the University of Pavia and Director of the Residency School in Neurology. She holds the position of Consultant Neurologist at the C. Mondino National Neurological Institute of Pavia (Italy), where she directs the Headache Science Centre and the Complex Unit of Neurorehabilitation. She is the Chair of the IHS International Headache Society Subcommittee for the Guidelines of Clinical Trials and she was one of the founding members of the European Headache Alliance. She is presently a member of the Board of Directors of the Italian Society of Neurorehabilitation. Download the presentation.

MTeresaFL_FotoKalina Tyminski 
She has been diagnosed with cluster headache (CH) in 2010 after 2 years of medical wandering. Since 2016 she is the President of AFVAC (Association Française Contre l'Algie Vasculaire de la Face), a patient association for patients working in partnership with healthcare professional, founded on 2005 for the advocacy of cluster headache patients. From June 2017 she is the chair of the Cluster Headache Special Interest Group of the EHA (European Headache Alliance) created to raise awareness about CH and reinforce CH patients’ advocacy at an European level. Download the presentation.

MTeresaFL_FotoMariano Votta
Director of Active Citizenship Network and Responsible for European Affairs at Cittadinanzattiva. He has more than 10 years of experience in the field of protection of citizens’ rights, stakeholder engagement, communication and civic information. His was the idea to encourage and promote the Member of the European Parliament Interest Group “European Patients' Rights & Cross-Border Healthcare” at the European Parliament during 2015.  Download the keynote speech.

MTeresaFL_FotoArlene Wilkie
She joined The Migraine Trust in October 2016 after more than five years as the chief executive of the Neurological Alliance. Prior to this, she spent 12 years with the Breast Cancer Campaign as their director of research and policy. She is a scientist by background before moving into the charitable sector and brings a combination of science, charity, neurological and management experience to support her work. Download the presentation.

The event has been realized thanks to the support of Teva Pharmaceuticals Europe B.V


April 18 Bruxelles (Belgium):  European Patients’ Rights Day 2018, Join Us!
Active Citizenship Network (ACN) will celebrate the 12th European Patients’ Rights Day (EPRD) with a multistakeholder conference to be held on 18th April 2018 in Bruxelles.
The aim of the convention is to debate, inform and exchange good practices on therapeutic adherence, sharing and discussing the different experiences and more effective solutions in overcoming some of the existing barriers to appropriate prescription and adherence to pharmacological medical plans. Read More

CLICK HERE to participate


Director and Editor in chief: Mariano Votta
Editors: Daniela Quaggia
Coordination and Production: Giacomo D'Orazio 

To contribute, plase write to: mail@activecitizenship.net

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Tel: (+39) 340 84 65 097 Mail: brussels@activecitizenship.net