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Monthly Newsletter edited by Cittadinanzattiva-Active Citizenship Network
Civic Activism | Patients' Rights | Consumers' Rights | Support ACN
Year 5th, number 46 - March 2017

“Changing course to Europe”
On 24 March from 14.00 to 24.00 in the Aula Magna of the Rome University of Sapienza (Aldo Moro square, 5), there will be a great event organised by the Forum of the Coalition of associations, included Cittadinanzattiva, which signed the declaration "Changing course to Europe”. The programe provides workshops, debates, interventions from the representatives  of  civic organisations, political actors and also musical entertainment.
Download of the programme here.
Click here to participate.


“Our Europe- Unity, Democracy, Solidarity.” Sign the call
“Our Europe” is a very large and plural coalition of civil society organisations, associations, trade unions, social centers, social movements and coalitions, foundations,  including Cittadinanzattiva/Active Citizenship Network. On occasion of the the celebrations of the 60th Anniversary of the Treaties of Rome on 25 March, “Our Europe” is organizing a three-day initiative in Rome. European organisations and coalitions already signed the call which is supported also by leftist and progressive political actors. As member of Our Europe, Cittadinanzattiva/Active Citizenship Network asks everybody who share the call and feel the need to converge in this dangerous time to change and save Europe and our common future to support this initiative and if possible to come to Rome.
The call in different languages, and the list of subscribers can be read on the website.
Click here to sign the call.

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The European conference “Exploring areas and benefits of cooperation in cross-border healthcare to protect patients’ rights”’ - held on 1 March 2017 at the European Parliament – was organised by Active Citizenship Network and hosted by the MEPs Interest Group “European Patients’ Rights & Cross-Border healthcare”. During the meeting first outcomes of  the EU communication campaign “Patients’ rights have no borders” were presented. The initiative - aimed at granting to every patient, everywhere in Europe, the right to receive planned care abroad – was actually promoted also for 2017 in 14 different Member States.
During the discussion on areas and benefits of cooperation in cross-border healthcare to protect patients’ rights, three main issues emerged:

  • Cross-border areas represent a litmus test of the will of Member States to collaborate. Every cross-border area (such as patients, passengers, purchases) needs a high degree of collaboration and common effort from the EU countries to fill up the gap perceived between European citizens and European Institutions.
  • Data and case histories presented during the event prove that the phenomenon of cross-border healthcare is growing. On the other side, the quality of information given to citizens, the capacity of orienting them and the complex procedures still create barriers for patient seeking healthcare abroad.
  • Given the circumstances and according to the pragmatic approach promoted by the European Commission, it is necessary to prioritise areas of actions that concern cross-border issues. Priority shall be given to actions aimed at raising awareness about the possibility to get healthcare abroad, as well as to initiatives directly involving patient civic organisations both at national and European level, by joining activities promoted by EU Institutions. A more cooperative approach should be adopted, both on a voluntary basis (as in the case of the newly launched European Reference Networks) and in accordance with what provided by law (e.g. dialogue between National Contact Points and patients organizations).

Until the moment when an adequate level of cooperation is reached, the path of patients seeking healthcare abroad will be difficult and their rights hardly respected. This is unacceptable, especially when it comes to patients affected by rare diseases, as they see cross-border healthcare as their only hope for a cure.

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Read more about the event here.
Learn more about the EU communication campaign here.
Click to download:


Image result for LOGO INTEREST group active citizenship networkZsuzsa Almasi – Romanian National Alliance for Rare Diseases (RONARD)
She is a psychologist and mediator, working with the RONARD since 2009. She is involved in organizing events and activities for patients and families affected by rare diseases and for professionals involved in the management of these diseases. As operator at Help Line NoRo Center for Rare Diseases, she also works with patient groups, support groups, presents or participates in conferences and trainings related to rare diseases.

Image result for LOGO INTEREST group active citizenship networkSonia Belfiore – Project Manager EU Affairs, Active Citizenship Network
She works as Project Manager for Active Citizenship Network since 2015. She also deals with networking and communication activities.  She has coordinated this event and is also responsible for a European communication campaign on cross-border healthcare.

Image result for LOGO INTEREST group active citizenship networkMEP David Borrelli – Europe of Freedom and Direct Democracy Group and co-founder of the MEPs Interest Group “European Patients' Rights and Cross-Border Healthcare”
Councillor in Treviso (2008-2013), candidate for President of the Veneto region (2010), Member of the European Parliament (2014- ). He is member of the Committee on Industry, Research and Energy (ITRE), Committee on International Trade (INTA), Delegations for the relations with the Mashreq countries, South Africa and Delegation of the Parliamentary Assembly of the Union for the Mediterranean.

Image result for LOGO INTEREST group active citizenship networkSimona Coroi – Romanian National Contact Point (Assistant)
2015-present: economist at the Romanian National Contact Point. She has experience in International Communications in healthcare sector. She shares the information regarding cross-border healthcare with any other EU NCP or any other institutions and also provides information to any person which is interested to be treated in a EU MS.

Image result for LOGO INTEREST group active citizenship networkCatherine Donohoe – Irish National Contact Point
She was appointed to her current role of General Manager of the Commercial Unit, Acute Hospitals Division of the Health Service Executive in 2007. The Commercial Unit has grown under her management to include the national Living Kidney Donor Reimbursement Scheme and the National Contact Point for the Cross Border Directive.

Image result for LOGO INTEREST group active citizenship networkAndreea Gărăiacu – Romanian National Contact Point (Coordinator)
She is Head office at the Romanian National Contact Point since 2014. She works for implementing European programs in the field of health and social security policies; monitoring the implementation processes run at national and local level and specific strategies in this fields; reviewing periodically, EU COM and EU COUNCIL juridical instruments applicable to the fields of health and social security policies.

Image result for LOGO INTEREST group active citizenship networkIlaria Giannico – Secretary General European Union of Private Hospitals (UEHP)
She is experienced in EU Affairs and EU funding programmes. Her professional background includes the collaboration with the Belgian-Italian Chamber of Commerce and the activity at Confindustria Delegation to the EU, working in close relationship with the EU institutions.

Image result for LOGO INTEREST group active citizenship networkFrançois Houÿez – Treatment Information and Access Director / Health Policy Advisor EURORDIS
He is working at the European Organisation for Rare Diseases Eurordis where he is Director of Treatment Information and Access, and Policy Advisor. He represents Eurordis at the Patients’ and Consumers’ Working Party at the European Medicines Agency (EMA) and in the European Network of Health Technology Assessment Agencies (EUnetHTA).

Image result for LOGO INTEREST group active citizenship networkLucie Robson – Senior Editor HealthManagement.org
She has worked in digital, print and broadcast journalism for more than 15 years for a range of media outfits. Since 2015 she has been an editor at leading healthcare management publication, HealthManagement.org where she has been privileged to work with contributors that include health thought leaders as well as many notable professionals in business, academia and healthcare policy-making.

Image result for LOGO INTEREST group active citizenship networkMagdalena Rutkowska – President Medical Travel Partner
President of Medical Travel Partner that helped over 1000 patients from abroad in Poland. In 2012-2015 as the member of Polish Medical Tourism Consortium she promoted Polish Medical Tourism on behalf of Polish Ministry of Economy. She was responsible for promotion in 7 countries and managed cooperation with 40 medical centers in Poland. She also teaches MBA healthcare program students in Poland. 

Image result for LOGO INTEREST group active citizenship networkEnrique Terol – European Commission DG SANTE
He works as Policy Officer and national expert in DG SANTE Unit B3 Cross-border Healthcare and eHealth of the European Commission and is in charge of the implementation of the European Reference Networks under the framework of the Directive of Cross-border Health care. His professional experience includes the clinical practice, managerial positions of Primary and Specialised Healthcare in private and public institutions and healthcare planning. He worked as Health Attaché in the Spanish Permanent Representation to the EU and coordinator of the area of Health in the Spanish Presidency of the EU between 2008 and 2011.

Image result for LOGO INTEREST group active citizenship networkMariano Votta – Director of Active Citizenship Network
He is Director of Active Citizenship Network and responsible for European Affairs at Cittadinanzattiva. He took the political initiative to encourage and promote the Member of the European Parliament Interest Group “European Patients' Rights & Cross-Border Healthcare”.

ACN is pleased to welcome Sofia Ribeiro as new MEP Supporter
Active Citizenship Network is glad to welcome MEP Sofia Ribeiro as a new supporter of the MEPs Interest Group “European Patients' Rights & Cross-Border Healthcare”. She is a Portuguese member of the EPP group and member of several Committees as the Committee on Employment and Social Affairs (EMPL). To read the updated list of the MEPs supporters, please click here.

Patients' Rights

Patient’s involvement in the National Medicine Agencies: let us know what is happening in your country!
Active Citizenship Network designed a short survey on the involvement of patients associations in each Member State. The collected data will be presented in occasion of the next European Patients’ Rights Day. Please let us know the different patients’ engagement approaches in the national medicines agencies processes! Active Citizenship Network  will be glad if you give us your precious opinion about the situation in your Country. Click here to fill the questionnaire. There is also a version of the questionnaire dedicated to the National Medicine Agencies. If you work in one of them, please use this questionnaire.

Help us help you – Pain Alliance Europe (PAE) Survey on Chronic Pain
Pain Alliance Europe has created an internet survey called “All-Europe Patients’ Survey” to learn how chronic pain has been treated around Europe. The power of this survey will increase according to how many answers will be collected. Cittadinanzattiva, as board member of PAE, invites you to complete the survey in order to collect as much information as possible. The results will be put through a careful analysis and we will publish them on PAE website. The results of the survey will also provide relevant data, in different languages, so every country can advocate easily for better options in their own national systems. The survey is available in 18 languages; please click here to fill the survey.

Consumers' Rights

WEEE in Italy: an informative campaign kicks off in major Italian cities
How much do Italians know about Waste of Electrical and Electronic Equipment (WEEE)? Why is it important to learn more about them and about their proper management?
To help citizens get a better understanding of WEEE , Ecodom (the leading Italian consortium in charge of management of Waste Electrical and Electronic Equipment in Italy), jointly with Cittadinanzattiva/Active Citizenship Network, has organised a series of workshops in the main Italian cities with the involvement of schools, universities, civic associations and local institutions. After those in Rome and Naples, other workshops will take place in Catania (30 March 2017), Milan (4 April 2017) and Turin (5 April 2017). Participants will be given a useful guide (download the IT version).

European Commission calls for experts to join its Financial Services User Group
The European Commission has launched a call for expression of interest for new members of the Financial Services User Group (FSUG). The renewal of the Group is part of the Commission's efforts to give consumers a strong voice in the EU policy making in financial services. The Group will advise the Commission on its ongoing work on the Capital Markets Union, with a particular focus on the distribution of retail investment products. It will also weigh on the implementation of the Commission's forthcoming Retail Financial Services Action Plan. The new members will operate over a four-year mandate. The deadline for submitting applications is 21 April 2017. 
For more information please click here.

Civic Activism

Applications to the 8th Transparency International School on Integrity (TISI) are open
Since 2010, TI School on Integrity hosted more than 800 future leaders from around 90 countries worldwide and became the leading summer course on anti-corruption in the world. The upcoming TISI 2017 will take place during 10-16 July 2017 in Vilnius, Lithuania. TISI exposes its participants to the latest developments in the field of anti-corruption and accountability and offers real opportunities to implement their ideas in practice. Following a rigorous selection process, selected students spend 7 highly intensive days learning from leading anti-corruption and accountability professionals. The deadline for scholarship applications is 1 May 2017. 
For more information look at the web site and Facebook page.


21 March 2017, Brussels (Belgium):  Cluster Headache: one of the worst pains known to man!”
Active Citizenship Network  participated as panelist to the conference “Cluster Headache - One of the worst pains known to man!” organised by the European Headache Federation (EHF) and the European Headache Alliance (EHA) to celebrate the second edition of the European Cluster Headache Day. The event was held on 21 March 2017 from 11:00 to 13:30 in Brussels at the European Parliament, in room ASP1H1. For further information on the event, please visit the website.
Furthermore, Active Citizenship Network - in the framework of its activities and commitment to avoid unnecessary pain - endorses the open letter, written by EHF and EHA, addressed to MEPs to improve access to care and conditions of patients suffering from cluster headache."

8 April 2017, Riolo Terme (Itlay): “Active Thermalism. The individual at the heart of care and as a driver of change”
Active Citizenship Network will be one of the panelists of the conference organised by EAPTC-European Association of Patients and Users of Thermal Centres. What is the psycho-physical and behavioural profile of the typical patient/user of thermal establishments? What possible areas for contact and collaboration do exist between thermal centres and the associations for the protection of patients/users? What input can thermal care provide to the welfare offering? Panelists are invited to share experiences and information on the topic. Read more

12 April 2017,  Brussels (Belgium): Stakeholder forum on the European Solidarity Corps
Further to President Juncker's announcement in his 2016 State of the Union Address, the European Solidarity Corps was launched on 7 December 2016. Since then, over 23,000 young people have expressed their interest in taking part in this initiative. Based on the results of a broad outreach action including a public consultation and targeted consultations with interested organisations and key actors, the stakeholder forum will enable an in-depth exchange of views on key issues regarding the forthcoming legislative proposal on the European Solidarity Corps, which is planned for the first semester of 2017. The forum will take place in the Charlemagne building of the European Commission (Rue de la Loi/Wetstraat, 170 – 1000 Brussels) from 9.00 a.m. to 16.30 p.m.
For more information on the European Solidarity Corps look at the web site.

10 May 2017, Brussels (Belgium): 11th European Patients’ Rights Day on “The European & National Medicines Regulatory Systems: the challenges for an equitable, timely and suitable access to innovation”

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Active Citizenship Network will celebrate the 11th European Patients’ Rights Day with a multi-stakeholder conference to be held on 10 May 2017 at the European Economic and Social Committee. The aim of the convention is to discuss, inform and suggest new approaches to the existing European and National Medicines Regulatory Systems, for better management of access to innovation. Indeed, the access to innovative therapies strongly contributes to define the quality of life of patients and the quality of healthcare services provided, respecting the fundamental values recognized by the European Charter of Patients’ Rights. The event will be an occasion to inform, discuss and take commitments to improve the respect of patients’ rights and their involvement in the policy-making and regulatory processes at national and European level. Read more about the event here. To participate please REGISTER HERE.


Director and Editor in chief: Mariano Votta
Editors: Sonia Belfiore, Eleonora Di Donna, Giuseppe Perretti
Coordination and Production: Giacomo D'Orazio 

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

Active Citizenship Network c.o. Cittadinanzattiva - Via Cereate 6 - 00183 Roma - Tel. +39 6 367181 - Fax +39 6 36718333
Representative office to the UE: Rue Philippe Le Bon, 46 - 1000 Brussels (Belgium)
Tel: (+39) 340 84 65 097 Mail: brussels@activecitizenship.net