Pain Euro-Mediterranean Coalition

The first civic Hub-incubator of best practices against pain across Europe

The challenge of chronic pain: from the European agenda into the European culture
Chronic pain was part of the list of priorities of the EU during the Italian Presidency, during the second part of 2014. Accordingly, and for the first time, the issue on pain was brought to the attention of all EU health ministers. For all those who have worked for this important result it was certainly gratifying, but there is not an insignificant challenge ahead: to reduce the impact of chronic pain in Europe by ensuring that the right to avoid unnecessary suffering and pain (11th Right in the EU Charter of Patient Rights) is guaranteed everywhere and to everyone.

At present, unfortunately, the situation is not as well as the survey carried out in 18 countries by Active Citizenship Network and Pain Alliance Europe has highlighted, with serious repercussions not only from the social point of view but also from the economic one. Therefore, it is time to join forces and work as a team.
On 23-24th May 2016 during the symposium meeting of the SIP-Societal Impact of Pain in Brussels, the constituency on pain took important steps concerning the impact of chronic pain on individuals’ life. A set of eight fundamental policy recommendations resulted from this collaboration among associations of chronic pain patients, healthcare practitioners, researchers, scientists and other stakeholders involved in pain care. Hereafter the key recommendations directed at the institutions of the European Union and national governments:

• Implementation of article 8.5 of the Cross-border Healthcare Directive
• Establish a EU platform on the societal impact of pain
• Integrate chronic pain within EU policies on chronic diseases
• Ensure that pain care is a part of policies and strategies on cancer
• Initiate policies addressing the impact of pain on employment
• Implement workplace adjustments for people with chronic pain
• Increase investment in pain research
• Prioritise pain within education for health care professionals, patients and the general public

These eight policy recommendations represented an important starting point in the development of a better European policy addressing chronic pain management, and we appreciate the decision to add pain to its agenda made by the Innovative Medicines Initiative (IMI) on December 2016.

However, it is still necessary to take concrete action against unnecessary pain. These eight policies cannot work only as recommendations, they need to be reinforced and implemented concretely among states.
We are aware that European Union works at different levels and we need not only to identify priorities and recommendations, or get the commitment of the Institutions, but we also need to promote concrete activities, involving all the stakeholders interested to play an active role.

For this reason, our commitment could be that of transferring what we have achieved from the European agenda into the European culture: that is, to raise awareness, fight stigma, improve quality of life for people suffering from acute and severe chronic pain, reduce the socio-economic impact of chronic pain in Europe by ensuring that the right to avoid unnecessary suffering is guaranteed everywhere and to everyone.
With the same aim, and - in general - to contribute to make the invisible visible on chronic pain, Sine Dolore and Active Citizenship Network have promoted the “Pain Euro-Mediterranean Coalition”. This idea was launched last June 2016 during the event realised at the EU Parliament “Pain therapy and the degree of patient’s pain in the age of cross-border healthcare”, and it received the support of the MEPs Interest Group “European Patients' Rights and Cross-border Healthcare”.

Geographical impact: focus on the EU-Mediterranean area
Some countries within the Mediterranean area are already significantly committed and involved in the fight against unnecessary suffering and pain.
The following facts in particular testify that the Mediterranean area is the place and is leading important change on chronic pain: 

• During the informal meeting of European health ministries, held on 22-23 September 2014 in Milan, Ministries from 28 EU member states reached a common position on the need of building a European network ensuring training of health professionals and of exchanging information on the effectiveness of therapies for the weakest population group.
• In France and Italy, for example, citizens have access and specific rights related to pain on the basis of an existing national legislation, which was in place prior to the Cross-border Healthcare Directive (2011/24/EU) referring to pain (article 8.5).
• Other Mediterranean EU Countries, that is Italy – again – in 2014 and Malta in 2017, have decided to work to put in the EU political agenda the topic of pain during their semester of Presidency of the Council of the European Union.
• Portugal, with a National Pain Control Program in Public Health System since 2001, updated in 2008, and a National Day since 1999, has included in the national political agenda the topic of pain.
• A Mediterranean Multidisciplinary Pain Forum has been arranged for 12 years now in Spain, and it is led by professionals and patient organizations to join efforts on the topic.
• “Sine Dolore Word Park”, realised in Minorca, is the first and only worldwide event ready to involve all the society on the issue on pain.

In order to exploit this geographical impact on chronic pain management, the idea behind this coalition is to join the forces among the countries within the Mediterranean area.    

Objectives

In response to  the slogan of SIP 2016 “Time for Action”, there is the willing from Active Citizenship Network and Sine Dolore to collaborate for the development of concrete efforts against unnecessary pain. This Coalition aims to be:

• An open multi-stakeholder platform mainly addressed to the constituency dealing with pain relief at local and national level across Europe rather than to EU umbrella organisations;
• The missing piece necessary to integrate the scientific research on pain with the “civic information” approach on the topic;
• The agora of operators of good practices on pain, encouraging the exchange of experiences among health professionals, healthcare providers, Institutions, civic associations and Patient Advocacy Groups (PAGs);
• A bridge on pain built in the Mediterranean area but intended to overcome EU borders and reach non-EU countries as well;
• The fusion of experiences coming from pain and patients’ rights constituencies;
• Facilitator for advocacy and policy actions on chronic pain at local, national and European level.

Thus, the diversity of members within the Coalition will strengthen collaborations among all the relevant stakeholders. At the same time, the different perspectives shared will enrich European and national experiences, expertise, data and benchmarking on chronic pain.

What the “Pain Euro-Mediterranean Coalition” is not
What the “Pain Euro-Mediterranean Coalition” is not: it is neither a new association nor an EU umbrella organisation.

Institutional support
The institutional support is provided by the MEPs Interest Group “European Patients’ Rights & Cross-border Healthcare”.

Scientific support
The scientific support is provided by the European Multidisciplinary Network in Pain, Research and Education (Efhre International University).

Constituency (ongoing activity)
The first enthusiastic actors who have decided to join the Coalition (but applications for membership are still open) are:

Country	Associations	Logo
Spain	Acción Psoriasi
Spain	Federación Española de Diabetes (FEDE)
Spain	Foro Español de Pacientes (FEP)
Spain	Asociación Española de Trasplantados (AET)
Spain	Alianza General de Pacientes (AGP)
Spain	Asociación Española de Pacientes con Cefalea (AEPAC)
Spain	Sociedad Balear del Dolor
Spain	Plataforma de Organizaciones de Pacientes
Spain	Asociación Ciudadana de Afectados de Cistitis Intersticial (ACACI)
Spain	Red Española de FM, SFC, SQM
Spain	Confederación Nacional de Fibromialgia y SFC (Sindrome de Fatiga Crónica)
Spain	ADOPEC (Asociación de dolor pélvico perineal crónico)
France	Association Francophone pour Vaincre les Douleurs (AFVD)
Croatia	Croatian Association for the Promotion of Patients' Rights
Kosovo	Professional Health Association
Kosovo	Patients’ Rights Association in Kosova
Albania	Together for Life
Switzerland	Associazione Cefalea Ticino
Malta	Malta Health Network
Malta	National Patients' Organisation
Portugal	Azorian Association of Chronic Pain Patients/Associação de doentes de dor crónica dos açores (ADDCA)
Portugal	Atlantic Association for the Support of the Patient of Machado-Joseph/ Associação Atlântica de Apoio ao Doente Machado-Joseph (AAADMJ)
Portugal	Force 3P – People with Pain/ Força 3P – Associação de Pessoas com Dor
Portugal	Portuguese Association of Patients with Fibromyalgia/Associação Portuguesa de Doentes com Fibromialgia (APDF)
Italy	Associazione Nazionale Strutture per la terza età (ANASTE)
Bulgaria	Patients' Organizations With you
Bulgaria	Institute Innovations
Bulgaria	Association of Reproductive Health, Pregnancy and Childcare "Smile"
Bulgaria	Association of Patients with Cardiovascular Diseases.
Bulgaria	Alliance of Transplanted and Operated ATO "Future for All"
International	WFIPP - World Federation of Incontinence and Pelvic Pain

Official presentations:

• Spain, 4 May 2017, see the interview

About the promoters

Sine Pain Association is a non-profit organisation, whose main purpose is to inform and advise patients who suffer from chronic pain. Sine Dolore encourages and promotes research on  pain syndromes and we help to improve the treatment of patients with acute and chronic pain, which brings together basic scientists, physicians and other health professionals from different disciplines and areas of common interest in pain research and the treatment.
For further information: http://sinedolore.org/

Contacts:
Asociación Sine Dolore
C/ Dr. Camps n.32, 
07703 Mahón, Illes Baleares (Spain)
Contact person: 
Gemma Fernández, Presidenta Asociación Sine Dolore
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Active Citizenship Network (ACN) is one of the most widespread and flexible European networks, composed by more than 100 civic, patients and users organizations. Established in 2001, it is coordinated by Cittadinanzattiva, the Italian non-profit organization founded in 1978, independent from any political affiliation, trade unions, private companies and public institutions. The main objectives of ACN are the promotion of civic activism & participation in the political arena, as well as the protection of citizens’ rights, which are both the strength and the uniqueness of ACN.
For further information: http://www.activecitizenship.net/

To know more the engagement of Cittadinanzattiva in the fight against useless pain, at national and EU level: http://activecitizenship.net/patients-rights/projects/83-the-engagement-of-cittadinanzattiva-in-the-fight-against-useless-pain.html

Contacts:

Headquarters:
Cittadinanzattiva Onlus/Active Citizenship Network
via Cereate, 6
00183 Roma
Tel: (+39) 06.36.71.81
Fax: (+39) 06.36.71.83.33
Representative office to the EU:
Rue Philippe Le Bon, 46
1000 Brussels - Belgium
Tel. (+39) 3408465097
Contact person: 
Mariano Votta, Director Active Citizenship Network
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EUROPEAN PATIENTS’ RIGHTS DAY 2017

Active Citizenship Network celebrated the 11th European Patients’ Rights Day with a multi-stakeholder conference, held on the 10 May 2017 in Brussels.

The aim of the convention was 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 recognised by the European Charter of Patients’ Rights. The event was 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...

EXPLORING AREAS AND BENEFITS OF COOPERATION IN CROSS-BORDER HEALTHCARE TO PROTECT PATIENTS’ RIGHTS

1 March 2017, 10:30 - 12:30 AM
Room ASP 7H1 - European Parliament, Brussels

Programme

10:00 – 10:30 Registration & Accreditation
Meeting point: Altiero Spinelli (ASP) entrance from Place du Luxembourg

Chair: Lucie Robson – Senior Editor HealthManagement.org

10:30 – 10:50 Welcome address and keynote presentation

• MEP David Borrelli (Italy) EFDD Group – Co-founder of the MEPs Interest Group “European Patients' Rights and Cross-Border Healthcare”
• Mariano Votta – Director of Active Citizenship Network

10:50 – 11:20 Towards a collaborative approach amongst NCPs, ERNs and patient organizations: exploring benefits and challenges of a joint cooperation

• Enrique Terol – European Commission - Cross-Border Healthcare & eHealth Unit
• Catherine Donohoe – Irish National Contact Point
• Simona Coroi, Andreea Gărăiacu – Romanian National Contact Point

11:20 – 11:30 First assessment of the European communication campaign “Patients’ rights have no borders”

• Sonia Belfiore – Project Manager European Affairs, Active Citizenship Network

11:30 – 12:20 Experiences & perspective concerning collaborations in cross-border healthcare. Proposals on how to cooperate efficiently with the other relevant stakeholders

• Zsuzsa Almasi – Romanian National Alliance for Rare Diseases (RONARD)
• François Houÿez – Treatment Information and Access Director EURORDIS
• Ilaria Giannico – Secretary General UEHP (European Union of Private Hospitals)
• Magdalena Rutkowska – President of Medical Travel Partner

12:20 – 12:30 Debate & closing remarks

Patients’ Voice - Study Visit in ITALY

On 7-10 November 2016, a Cypriot delegation of 10 people was hosted in Rome by Active Citizenship Network for a study visit in the framework of the EU project “Patients’ Voice”. The trip was meant to give them a practical insight on protection of patients’ rights, advocacy techniques and strategies and policy building. The 4-day visit included classes and meetings with several representatives of Italian associations with an expertise in the health field. The tours in local hospitals and exchange of views with health professionals and medical directors were also of great interest and appreciated.

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Patients’ Voice - European Project

Patients’ Voice Project is the first European Union funded project, implementing by the Universal Patient Rights Association (UPRA), that want to help to promote and advocate for patients’ rights in Northern Cyprus. It has become active since March 2016 as a partnership project between UPRA and Active Citizenship Network.

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“Patients' rights have no borders” - Leaflets

Patients’ rights have no borders (English Version)

Year: 2016
Topic: patients' rights to receive planned care in another EU Member State
European Project: Patients’ rights have no borders

“Patients' rights have no borders”

To celebrate the 10th Anniversary of the European Patients’ Rights Day, Active Citizenship Network has decided to organize a widespread campaign in 2016 in cooperation with some of the national patient associations involved in its network.

Read more...

“Patients' rights have no borders”

To celebrate the 10th Anniversary of the European Patients’ Rights Day, Active Citizenship Network has decided to organize a widespread campaign in 2016 in cooperation with some of the national patient associations involved in its network.

Read more...

“Patients' rights have no borders” - Supporters

Patient Organisations

Bulgarian Association for Patients Defence

Tel.: 02/981 66 69
Fax: 02/44 26 444
Mob.: 0886 754000

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Address: Bulgaria, Sofia
Architect Yordan Milanov street, № 10, FL 3.

LHRM e.V. (Leukämiehilfe RHEIN-MAIN e.V.)

Tel.: (+49) 06142-32123 Büro: 06142-32240
Fax: (+49) 06142-301185 Büro: 06142-175642
E-Mail: This email address is being protected from spambots. You need JavaScript enabled to view it. / This email address is being protected from spambots. You need JavaScript enabled to view it.
Address: Falltorweg 6
D-65248 Rüsselsheim - Germany

Asociación Ciudadana de Afectados de Cistitis Intersticial

Tel.: 676.466.630  –  630.119.249de 17:00 a 19:00h
E-Mail: This email address is being protected from spambots. You need JavaScript enabled to view it.
Address: Pareto, 55 · 08902  l’Hospitalet   (Barcelona)

Networks

EuropaColon
Tel.: +44 1722 410 515
Address: Unit 5, Deans Farm 
               Stratford sub Castle
               Salisbury
               SP1 3YP – UK
FACEBOOK.COM/ EUROPACOLONHQ
TWITTER.COM/EUROPACOLON
YOUTUBE.COM/EUROPACOLON

Global Myeloma Action Network (GMAN)     
E-Mail: This email address is being protected from spambots. You need JavaScript enabled to view it.
FACEBOOK.COM/GMANconnect
TWITTER.COM/GMyelomaAn

World Alliance of Pituitary Organizations (WAPO)
Tel.: +79175791620
Email: This email address is being protected from spambots. You need JavaScript enabled to view it.
FACEBOOK.COM/WAPO.ORG/

“Patients' rights have no borders” - Partners

• Austria
  Lower Austrian Patient and Nursing Advocacy
  
  Email: This email address is being protected from spambots. You need JavaScript enabled to view it.
  Tel.: +43 (0)2742 9005 15752
  Website: www.patientenanwalt.com
  Address: Rennbahnstraße 29 (Glaswürfel)
  Tor zum Landhaus
  A-3109 St. Pölten

• Belgium
  Active Citizenship Network
  
  REPRESENTATIVE OFFICE TO THE EU
  Email: This email address is being protected from spambots. You need JavaScript enabled to view it.Website: http://activecitizenship.net/Tel.: +39 3408465097
  Address: Rue Philippe Le Bon, 46
  1000 Brussels – Belgium

• Bulgaria
  Patients' Organizations “With You”
  
  Email: This email address is being protected from spambots. You need JavaScript enabled to view it.
  Tel.: +359 886 437 609
  Website: http://patients.e-zdravey.com/
  Address: Bulgaria,  Sofia 1000,
  Tsar Simeon str., 5B

• Croatia
  Croatian Association for the Promotion of Patients' Rights
  
  Email: This email address is being protected from spambots. You need JavaScript enabled to view it.
  Tel.: 091 502 78 61
  Website: www.pravapacijenata.hr/hr
  Address: Zrinsko Frankopanska 2b,
  21000 Split HR

• Cyprus
  Cyprus Alliance for Rare Disorders
  
  Email: This email address is being protected from spambots. You need JavaScript enabled to view it.
  Tel.: +357 22 319 129
  Website: www.raredisorderscyprus.com
  Address: 31 Ifigeneias street, 2007 Strovolos, Nicosia (Cyprus)
  P.O Box 28807, 2083 Strovolos

• Czech Republic
  Klub pacientů mnohočetný myelom, z.s.
  
  Email: This email address is being protected from spambots. You need JavaScript enabled to view it.
  Website: http://www.mnohocetnymyelom.cz/
  Address: Kamenice 5, 625 00 Brno-Bohunice, Czechia

• Denmark
  Rare Diseases Denmark
  
  Email: This email address is being protected from spambots. You need JavaScript enabled to view it.
  Tel.: +45 3314 0010
  Website: http://sjaeldnediagnoser.dk
  Address: 21, Blekinge Boulevard 2
  2630 Taastrup

• Finland
  Association of Cancer Patients in Finland
  
  Email: This email address is being protected from spambots. You need JavaScript enabled to view it.
  Tel.: 044 053 3211
  Website: www.syopapotilaat.fi
  Address: Malminkaari 5,
  00700 Helsinki - Finland

• France
  Inter-Association on health (CISS)
  
  Email: This email address is being protected from spambots. You need JavaScript enabled to view it.
  Tel.: 01 53 62 40 30
  Website: www.leciss.org
  Address: 10, Villa Bosquet - 75007 Paris

• Germany
  Bürger Initiative Gesundheit e.V.
  
  Email: This email address is being protected from spambots. You need JavaScript enabled to view it.
  Tel.: 0049 – 821/5086 7960
  Website: www.buerger-initiative-gesundheit.de
  Address: Beethovenstr. 2
  86150 Augsburg

•  Greece
  Greek Alliance for Rare Diseases
  
  Email: This email address is being protected from spambots. You need JavaScript enabled to view it. / This email address is being protected from spambots. You need JavaScript enabled to view it.
  Tel.: +30 210 7660989 / +30 210 7600289
  Website: http://pespa.gr/
  Address: Timotheou 99-101 - 16232 Athens

• Hungary
  Hungarian Federation of People with Rare and Congenital Diseases
  
  Email: This email address is being protected from spambots. You need JavaScript enabled to view it.
  Tel: +36 1 790 4532
  Website: www.rirosz.hu
  Address: 1089 Budapest, Orczy út 2.

• Ireland
  Irish Patients’ Association
  
  Mail: This email address is being protected from spambots. You need JavaScript enabled to view it.
  Tel.: 00353 12461157
  Website: www.irishpatients.ie
  Address: TheClinic.IE, Glenageary Shopping Centre,
  Glenageary, Co. Dublin, A96 VY20

• Italy
  Cittadinanzattiva - Tribunal for patients’ rights
  
  E-mail: This email address is being protected from spambots. You need JavaScript enabled to view it.
  Tel.: 06/36718444 (Monday, Wednesday And Friday from 9:30 AM to 13:30 AM)
  Website: www.cittadinanzattiva.it
  Address: via Cereate, 6 - 00183 Roma - Italy

• Lithuania
  Council Of Representatives Of Patients' Organizations Of Lithuania
  
  E-mail: This email address is being protected from spambots. You need JavaScript enabled to view it.
  Tel.: +370 5 262 0783 / +370 652 11555
  Website: www.pacientutaryba.lt
  Address:  Gedimino av. 28-404,
  LT-01104 Vilnius

• Malta
  Malta Health Network
  
  Email: This email address is being protected from spambots. You need JavaScript enabled to view it.
  Tel.: (+356) 99873213
  Website: www.maltahealthnetwork.org
  Address: P.O. Box 2, Qormi Road, Marsa MRS 1000 Malta

• The Netherlands
  EPECS - European Patients Empowerment for Customised Solutions
  
  Email: This email address is being protected from spambots. You need JavaScript enabled to view it.
  Tel.: +31 (0)6-36062039
  Website: www.epecs.eu
  Address:  Capucijnenstraat 68 NL - 6211 RS Maastricht

• Poland
  Institute for Patients’ Rights & Health Education
  
  Email: This email address is being protected from spambots. You need JavaScript enabled to view it.
  Tel.: +48 (22) 628 08 63
  Website: www.prawapacjenta.eu
  Address: Piękna 64a street lok .8 , 00-672 Warsaw , Poland

• Portugal
  Azorean Chronic Pain Patients Association
  
  Email: This email address is being protected from spambots. You need JavaScript enabled to view it.
  Tel.: 910 696 806
  Website: http://dorcronicaacores.wixsite.com/addca
  Facebook: https://www.facebook.com/addca.acores
  Address: Rua Dr.Aristides Moreira Mota, 69
  CP. 9500-054 Ponta Delgada

• Romania
  Romanian National Alliance for Rare Diseases
  
  Email: This email address is being protected from spambots. You need JavaScript enabled to view it.
  Tel.: 0260.610.033 / 0735.858.667
  Website: www.bolirareromania.ro
  Address: str. Avram Iancu, nr.29, etaj III, Zalău, jud.Sălaj, România

• Slovakia
  Society of Consumer Protection
  
  Email: This email address is being protected from spambots. You need JavaScript enabled to view it.
  Tel.: 00421 949314111 / 0944 533 011
  Website: www.sospotrebitelov.sk
  Address:  Nábrežie Jána Pavla II. 439/16 058 01 Poprad

•  Slovenia 
  
  SIBAHE Slovenian Foodbank
  Email: This email address is being protected from spambots. You need JavaScript enabled to view it.
  Tel.: +386 40 534 375
  Address: Drapšinova 5/a - 3000 Celje
  
  Kultlab Celje Society
  
  Email: This email address is being protected from spambots. You need JavaScript enabled to view it.
  Tel.: +386 40 534 375
  Address: Drapšinova 5/a - 3000 Celje
  
  Association for justice and control
  
  Email: This email address is being protected from spambots. You need JavaScript enabled to view it.:
  Tel.: +386 40 771 814
  Address:Drapšinova 5/a - 3000 Celje

• Spain
  Plataforma de Organizaciones de Pacientes
  
  Email: This email address is being protected from spambots. You need JavaScript enabled to view it.
  Tel.: +34 93 106 17 59
  Website: www.plataformadepacientes.org
  Address:  Paseo de las Delicias, 31, esc. izda. 5º izda. 28045 Madrid

• United Kingdom
  Pelvic Pain Support Network
  
  Email: This email address is being protected from spambots. You need JavaScript enabled to view it.
  Website: www.pelvicpain.org.uk
  Address: 21, Stourpaine Rd, Poole
  Dorset - BH17 9AT