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Monthly Newsletter edited by Cittadinanzattiva-Active Citizenship Network
Civic Activism | Patients' Rights | Consumers' Rights | Support ACN

Year 3th, number 23 - July 2014

Best Practices on Chronic pain: GET ACTIVE!
Active Citizenship Network is looking for Best Practices dealing with chronic pain, with an emphasis on policy initiatives aimed at increasing patient empowerment, awareness campaign for the benefit of citizenship, attention of various stakeholders. To these may be added also good practice in the clinical management of chronic pain and dedicated tools. The most significant will be published and showed in a European event celebrated during the EU Italian Presidency next 2nd of October in Brussels titled “Chronic pain: making the invisible visible. European collection of good practices”.
The invitation to participate is addressed to both single associations of patients with chronic disease and chronic pain, and networks / umbrella Organizations. The deadline to participate is the end of August. To participate write to Daniela Quaggia: d.quaggia@activecitizenship.net and fill the online form

More information:

EU civic research: collection of good practices on chronic pain
Good practice: the policy of Cittadinanzattiva
The Engagement of Cittadinanzattiva in the Fight against Useless Pain


Questionnaire on crowdfunding web platform
What does a citizen need to know about a project he/she wants to invest in? What are the most important factors to build citizens’ trust in an online platform? In order to boost citizen investment in Renewable Energy Source (RES), Active Citizenship Network has realized a online Questionnaire. Filling it, you will help us to better define the requirements of what will be a transparent platform that will promote informed decision-making investments in renewables by citizens all over the EU. Deadline to fill it: 25th August

More information:

CITIZENERGY-European citizens for renewable

Patients' Rights

Antitrust: Commission fines Servier and five generic companies for curbing entry of cheaper versions of cardiovascular medicine
The European Commission has imposed fines totalling €427.7 million on the French pharmaceutical company Servier and five producers of generic medicines – namely, Niche/Unichem, Matrix (now part of Mylan), Teva, Krka and Lupin – for concluding a series of deals all aimed at protecting Servier's bestselling blood pressure medicine, perindopril, from price competition by generics in the EU. Through a technology acquisition and a series of patent settlements with generic rivals, Servier implemented a strategy to exclude competitors and delay the entry of cheaper generic medicines to the detriment of public budgets and patients in breach of EU antitrust rules. Read more

Macedonia: Establishment of National TB coalition, first of its kind in Southeastern Europe
The new platform aims to define and establish priorities in the provision of services for tuberculosis, to develop a joint plan for sustainability of services; and to ensure the integration and coordination of activities between existing and new civil society organizations. The initiative was organized by the Center for medicine, ecology and research MERC who is experienced in the field of prevention, education, advocacy and research on tuberculosis in Macedonia. MERC is a partner of the STOP TB partnership (WHO) and member of the TB Coalition Europe. Visit the website.

Italy: Signed agreement Aifa-Eupati for patients’ involvement
The aim of the agreement signed between the Italian Medicines Agency and the European Academy of patients on the Therapeutic Innovation is the investing on the empowerment and the education of the patient to promote the qualified participation in the experimental way, development and the monitoring of the medicines. Read more (Italian language)

Canada: Summit on Access to Drugs for Rare Diseases
Last 20-21 July, in Canmore, Alberta (Canada), the Canadian Organization for Rare Disorders organized “High Level Summit to Craft Canada’s Orphan Drug Access Framework” to build on the results from the forums on a Canadian Strategy for Rare Diseases held during spring 2014. Antonio Gaudioso, Secretary General of Cittadinanzattiva, attended the meeting. Visit the website.

The British Medical Journal is calling for patients help to improve the patient centeredness of its papers
If you’re a patient living with disease, or a patient advocate acting on the behalf of someone or for a patient group with a medical condition, BMJ ‘d like to invite you to take part in a unique initiative to improve the patient centredness of BMJ research, education, and analysis articles by asking patients to comment on them. Read more

HTAi Patient Group Submissions Template for Medicine’s HTA launched
A Patient Group Submission Template is intended to act as a guide for HTA organizations that they can amend to suit their specific needs. It should be offered to patient groups to enable them to submit information to an HTA. Patient groups and industry can use it to understand how patients' experiences can have most impact in HTA, support training and encourage its use by HTA organizations in their own country or region. Visit the webpage

Health Technology Assessment International 2014
Last June, during the 11th Annual Meeting HTAI at the Grand Hyatt Washington in Washington DC, USA, Cittadinanzattiva presented a speech titled “Multi-stakeholder partnership as a tool of citizens¹ empowerment to build a participatory HTA model in Italy”. Read more and download the presentation

Consumers' Rights

Launched the information campaign on the new Directive on the consumers’ rights
“Five rights to know” is the title of the informative campaign which In Italy the Antitrust- Competition And Market Authority - have launched for the protection of the consumers after the reception of the European Directive "Consumer Rights". Read more and watch the video

Italy: Study by Cittadinanzattiva on weak social groups and local public services
The research shows the weakness of the measures enacted to sustain the average Italian family which during the years has become more and more a weak subject squeezed between the economic crisis and a welfare system no longer adequate for the needs of a deeply changed society. The study led by Cittadinanzattiva was presented in April in Rome and in June in Romania too, during the EU conference “Civil Society and Solidarity in Times of Crisis. Addressing the Challenges of the Romanian and European Political Crisis”. Read more and download the presentation.

The city of the energetic efficiency
They have begun with the prevention for the flood, when they have decided that it would be useful a natural system of water absorption using the local lagoons. Then in Wildpoldsried, in Germany, the idea of doing everything “natural” hasn’t stopped: among others, projects of energy efficiency, sustainable and mini hydroelectric system. Today that town is known all around the world for how she takes care about the environment, meanwhile the town budget registers an asset of 4 million euro to allocate to social services, thanks to the exceeded energy produced (the triple of the requirements) from sustainable sources. Read more (Italian language)

Athletes tackle climate change
Connect4Climate and Fórum das Américas have joined forces to launch #Sport4Climate, a global communication campaign that showcases how sport is tackling one of Earth’s most formidable foes. Watch the video or visit Sport4Climate.org to see how athletes across the world are standing up to climate change.

New EU website to share environmental data
Launched in September 2012, the project is now in its final months and the web portal SIPE-RTD is available in its first version. Visit the website

Civic Activism

European Innovation Partnership on Active and Healthy Ageing: video
Improving the quality of life of older people is a priority for the European Commission, that has realised a new video on the importance of active and healthy ageing and targets a larger public. See the video

More information:

European Innovation Partnership on Active and Healthy Ageing
Mobilising the Potential of Active Ageing In Europe
Frailty in old age identifying priorities for a EU policy
Active Ageing citizens at the center of EU health policy


1-2 September, Barcelona (Spain): EFPC 2014 Bi-annual conference: The Future of Primary Health Care in Europe V
The conference will be organized to the EFPC tradition (small scale, interactive and interdisciplinary), bringing together patients, practitioners, administrators, policy makers, politicians and researchers within the field of primary health care and public health. Conference themes will focus on issues related with Innovation, Sustainability, Equity, Critical thinking and Uncertainty. Read more

4-5 September, Brussels (Belgium): EPHA 5th Annual Conference
EPHA’s annual conference will gather high level speakers and thought leaders to engage in a constructive debate on the priorities of the EU for the next five years. Visit the website

16 September, Rome (Italy): Webinar on protecting citizens' rights
During the next European Mobility Week, Active Citizenship Network organizes a EU webinar next 16th of September in Rome titled “Protecting Citizens' Rights: challenges and opportunities for EU passengers”. The conference is part of the "Joint Citizen Action for a Stronger, Citizen-Friendly Union" (JoiEU) project. Based on the conference results, a set of recommendations will be made to institutions and stakeholders to facilitate mutual communication and citizen participation. Read more

18, 19 September, Prizren (Kosovo): 5th International Conference for Pain Treatment
PRAK-Patients' Rights Association in Kosovo in collaboration with PHA-Professional Health Association are going to organize the "5th International Conference for Pain Treatment". The conference will be as bridge between different scientific researchers, exchange of new ideas, applying new technology and application of new methods in practice. Read more

26-30 September 2014, Madrid (Spain): ESMO 2014
The ESMO Patient Track is dedicated to cancer patient groups, representatives of cancer leagues, healthcare professionals, industry representatives and caregivers the Patient Track will open on Saturday morning, 27 September and continue throughout the day on Sunday, 28 September 2014. ACN will attend as speaker. Read more

27 September: Worldwide day against pain
The Italian ISAL Foundation organizes this event in order to inform people about chronic pain. The goal is to spread knowledge about law38/2010 and the possibility to fight chronic pain diseases. For further information, please contact ISAL Foundation: giornatamondiale@fondazioneisal.it

2 October, Brussels (Belgium): Chronic pain: making the invisible visible. European collection of good practices
The conference, organized by Active Citizenship Network, will represent an important occasion due to the political framework: this year, for the first time at European level, the issue of chronic pain is being put on the agenda by the EU institutions, also thanks to the active work of a number of civic associations all over Europe. To join us, read more and fill the online form

3 October, Menorca Island (Spain): II Jornada de la Escuela Internacional Sine Dolore para Pacientes y Familiares con Dolor
L’evento è organizzato da Sine Dolore, Asociación Española de Pacientes contra el Dolor. Visite the webpage

3-4 October, Menorca Island (Spain): III Meeting of EMNIPRE
In this edition, European Multidisciplinary Network in Pain Research and Education, will present the new streams and ways of investigation, as well as the new nomeclator in the field of pain. Download the programme

9-11 October, Athens (Greece): World Mental Health Day “Living with Schizophrenia”
An event to discuss how we can contribute to a better understanding of the experience of schizophrenia, to greater empathy with the persons who experience it and to a consequent improvement in our attitude and practice towards the persons who suffer from it.
For further information, please contact the Congress Secretariat, ERA: info@era.gr

17-18 November, Brussels (Belgium): 17SIP Symposium 2014
The timing of this years SIP symposium is scheduled to coincide with the Italian Presidency of the EU council as during this period for this first time ever all EU Health Ministers will be discussing the societal burden of Chronic Pain and Palliative Care and will be actively ebating how to address this health policy priority in the years to come. Click here to the registration website.

Director and Editor in chief: Mariano Votta
Vice-director: Alessandro Cossu
Editors: Daniela Quaggia
Coordination and Production: Giacomo D'Orazio
We thank "Expert network EU4U" for collaboration

To contribute, plase write to: mail@activecitizenship.net
Via Cereate 6 - 00183 Roma - Tel. +39 6 367181 - Fax +39 6 36718333