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Monthly Newsletter edited by Cittadinanzattiva-Active Citizenship Network
Civic Activism | Patients' Rights | Consumers' Rights | Support ACN
Year 6th, number 60 - July 2018
Highlight

From local to global: the role of the Sine Dolore World Park to enhance the patient's' right to avoid pain through the EU network of manager of good practices on chronic pain

The recent presentation at the European Parliament of the Spanish experience "Sine Dolore World Park", which took place on April 26th thanks to the support of the MEP Rosa Estaràs Ferragut and the collaboration of Active Citizenship Network, represents at the same time a point of arrival and a point of departure for the organizers of the Sine Dolore European Pain Foundation, in particular for “the deus ex machina” Prof. Jordi Moya, to whom the merit of having always believed in this initiative, even in spite of those who have hastily rejected it as: “very nice initiative, made in a beautiful place, but in a context that is too small that has no impact”. Read more

 

MarianoVotta
Director Active Citizenship Network

Focus

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

 

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 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.

PANELISTS' PROFILES

Neil Betteridge
He now runs Neil Betteridge Associates (UK), a company offering patient insight at a strategic level to UK and international projects involving patient associations, health professional organisations and private companies. He currently helps to coordinate much of the European work of GAfPA, the Global Alliance for Patient Access.

Judy V Birch 
Co Founder of the Pelvic Pain Support Network (UK) and charity volunteer.
2017 awarded with the European Civic Award for Good Practice: Chronic Pain in the professional education category for patient experience sessions on chronic pelvic pain with undergraduate nurses and 4th year medical students at Leeds and Southampton Universities.

Paul De Raeve
Registered nurse since 1984. In 2002, he was appointed as General Secretary of the European Federation of Nurses Associations (EFN). EFN activities relate to the promotion and protection of nurses and the nursing profession with particular reference to the EU and Europe.

MEP Rosa Estaràs Ferragut
Spanish Member of the European Parliament in the Group of the European People's Party (Christian Democrats). Vice-Chair of the PETI Committee on Petitions. Member of the JURI Committee on Legal Affairs & DACP Delegation to the ACP-EU Joint Parliamentary Assembly.

Jordi Moya Riera
President of the Sine Dolore, European Pain Foundation and Director of the Sine Dolore Research, Chair of the EFHRE Interenational University (EIU).
Medical Director of the Clinical Pain Institute of Menorca since 1998. Director of the Multidisciplinary Mediterranean Pain Forum since 2006.
Founder of the Association Against Pain: SINE DOLORE (2004).

Sam Kynman
Executive Director of the European Pain Federation EFIC. The European Pain Federation is a is a multidisciplinary professional organisation in the field of pain research and medicine, consisting of the 37 chapters of the International Association for the Study of Pain (IASP®). The European Pain Federation are partners in the Societal Impact of Pain platform.

Raúl Fernández
Nurse and Professor at Efhre International University (EIU), General Secretary and Trustee Co-founder of Efhre International University. Master's Degree in Urgencies, Emergencies and Critical Care. Vice President of the Spanish Emergency Association 112 (AEM112).

William Raffaeli
Founder and President of ISAL Foundation Institute for Research and Educational Programs on Pain.
He is actually Professor of Anaesthesia and Reanimation of Parma University. In charge Member of the Emilia-Romagna Regional Committee of “Pain-Free Hospital”.

Luis M. Torres
Associate Professor of Anesthesia at the University of Cádiz and Head of the Anesthesia Service and Pain Treatment. President of the Andalusian Pain Association; Director of the Journal of the Spanish Society of Pain.

Mariano Votta
Public affairs professional and journalist, is the Director of Active Citizenship Network (ACN), the international branch of the Italian NGO Cittadinanzattiva, where he is responsible for European Affairs. Passionate about healthcare and consumer issues, he has more than 17 years of experience in the field of advocacy, stakeholder engagement, European projects, communication and civic information.

See the Conference Programme and all the PPT presentations
The speakers’ biographies
Photos of the event
See the video of SDWP
Download Save the date
Clippings & press articles: Es Diari (27-4-2018); Es Diari (6-5-2018); Salut i Força (7-20 May 2018)

Pain Euro-Mediterranean Coalition Annual Meeting 2018

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

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

The First Annual Meeting of the Pain Euro-Mediterranean Coalition” was organized last 6 of May 2018 in in Menorca Island (Spain) thanks a join initiative of Sine Dolore European Pain Foundation and Active Citizenship Network, The promoters of the first civic incubator of best practices against pain across Europe, an informal network composed by manager concretely engaged to carry out good practices across Europe.
The event was promoted in the framework of the IV edition of the “SINE DOLORE WORLD PARK, the unique theme park in the world against pain and for the quality of life.
The meeting was to facilitate the exchange of experiences among the managers of good practices in the area of chronic pain -gathered across Spain- and to explore how to promote these win experiences  at EU level. 

 

PANELISTS' PROFILES

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

Jordi Moya Riera
President of the Sine Dolore, European Pain Foundation and Director of the Sine Dolore Research, Chair of the EFHRE Interenational University (EIU).
Medical Director of the Clinical Pain Institute of Menorca since 1998. Director of the Multidisciplinary Mediterranean Pain Forum since 2006.
Founder of the Association Against Pain: SINE DOLORE (2004).

Víctor Segura Jiménez
Faculty of Education Science, University of Cadiz, Spain; Faculty of Sport Science, University of Granada, Spain

Inmaculada Álvarez Gallardo
Faculty of Education Science, University of Cadiz, Spain; Faculty of Sport Science, University of Granada, Spain

Marisol Soledad Morales Cañas
President Red Española Dolor Crónico (FM/SFC/SQM)

Xan Eguía
Author del libro “Inevitable como la vida. Cuando el dolor se llama fibromialgia”

Asun Caravaca Marín
Presidenta ACACI-CI-SDV, Asociación Ciudadana Afectados Cistitis Intersticial-Síndrome Dolor Vesical

Maria José Félix Mora
Presidenta Confederación Nacional de Fibromialgia y SFC

Maria Huerta Ruiz
Fundadora AEPA-ATM, Asociación Española de Pacientes con dolor neuropático, neuralgia del trigémino y disfunción de Articulación Temporomandibular

María Soledad García Penalta
Board PAE – Pain Alliance Europe

Gloria Romanello
Admnistrative Officer of WFIPP - World Federation of Incontinence and Pelvic Pain

Manuel Corral Rosado
Coordinador de EMNIPRE - European Multidisciplinary Network in Pain Research and Education

Hermann Ribera
Presidente de la Sociedad Balear del Dolor

Mariano Votta
Public affairs professional and journalist, is the Director of Active Citizenship Network (ACN), the international branch of the Italian NGO Cittadinanzattiva, where he is responsible for European Affairs. Passionate about healthcare and consumer issues, he has more than 17 years of experience in the field of advocacy, stakeholder engagement, European projects, communication and civic information.

See the Conference Programme and all the PPT presentations
Photos of the event
Download Save the date
Read the programme in Spanish language

News
Patients' Rights

The winners of the Brain, Mind, and Pain Patient-Centred Innovation Grant 2018, announced in June in Brussels
As Jury Panel member of the initiative, Active Citizenship Network  is glad to share the Winners of the 2018 edition of the BPM Grant. This year’s theme was “Overcoming problems in access to treatments” and the 3 winners were:  "MyBrainNet", a central platform for neurological brain diseases;  "ASPERGA",  with an auditory aid that helps people with autism to reduce their sensory pain; and  "Master Your Pain" an innovative, personalized e-health platform to help patients with rheumatic pain. Read more on the grant website

New edition of the “EU Civic Prize on Chronic Pain - Collection of good practices”  Apply Now!

                        

The Application period for the second edition of the bi- annual research-project at the European level “EU Civic Prize on Chronic Pain - Collection of good practices” has started!  You can now enter your good practice by completing an on-line form.

LINK TO FORM HERE!

The award is open to any healthcare stakeholder: patients’ associations, health professionals, private and public hospitals, universities, etc.  Read more

For more information, please contact Daniela Quaggia: d.quaggia@activecitizenship.net

Educating and Empowering Patients in Malta
1 year after 2017 SIP Symposium, Active Citizenship Network  came back again in Malta to advocate for patients' rights and to confirm its committment on chronic pain. Invited by the new born "National Patients' Organization Malta", Active Citizenship Network  was engaged for 2 training initiatives titled "Educating and Empowering Patients": on 8 of June in Gozo College Secondary School together with Minister for Gozo Justyne Caruana, the day after in Malta. To know more, click here.

Events

20 September 2018, Bruxelles (Belgium): SIP Webinar  
The European Commission will host the second Societal Impact of Pain webinar on Thursday 20th September, 11h30 to 12h30 CET.  The first webinar of the Thematic Network on the Societal Impact of Pain (SIP), hosted by the European Commission, took place last 25th June, when EFIC and PAE presented the draft Framing paper that serves as a more detailed background document of the Joint Statement. To read more click here.

2 – 5 October 2018, Montréal, Canada: International Congress on Palliative Care
The 22nd International Congress on Palliative Care will take place from October 2 to 5, 2018 in Montréal, Canada. Organized under the auspices of Palliative Care McGill, McGill University, the Congress will once again welcome the worldwide palliative care community. To know more, click here

6 November 2018, Bruxelles, Belgium:  European training seminar on vaccination
Active Citizenship Network (ACN) will organize an European training seminar on the theme of life-course vaccination opened to at least selected 20 leader of civic and patients associations coming from different countries. The reason is to responds to the need to be more up-to-date and prepared in the face of a phenomenon (the decrease in vaccination coverage) that has returned to topical relevance; to better identify, recognize and struggle the increased external factors that can negatively influence the vaccine policy in EU Member States and have updated information & knowing how to recognize official sources of information. To have more information click here

7 November 2018, Bruxelles, Belgium:  Event at EU Parliament “European active citizen to advocate on the value of vaccination”
After the successful event “The challenges of life-course vaccination to enhance public health protection in Europe: a multi-stakeholder approach, ACN, just some months before the election of the new EU Parliament, will organize an event to reflect, in a multi-stakeholder environment, on the commitment of EU Institutions to the topic and to produce a proposal of positioning, of the civic associations involved about the Eu work to strengthen the cooperation among all relevant actors.  To contribute for a more integrated policies cooperation to the theme, avoiding any silos approach. To participate click here

 

Credits
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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