“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

The involvement of Active Citizenship Network in SIP 2016

In the context of the SIP 2016, ACN has been mainly involved in the Working Group 1 titled "Pain as a quality indicator for healthcare".

Because of its efforts in the fields of the protection of patients' rights and cross-borderhealthcare, ACN was entrusted with the secretariat of the Working Group 1, while Cittadinanzattiva-Tribunal for Patients' Rights was entrusted with the task of presenting, at European level, an example of good practice realized in Italy on pain treatment.

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Symposium “Societal Impact of Pain” (SIP) 2016: “Time for action”

The 6th event of the Societal Impact of Pain (SIP) will address anyone involved in pain policy e.g. healthcare professionals, politicians, representatives of pain advocacy groups, insurances, health authorities, regulators and budget holders.

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Reducing waste and inefficiency in the healthcare systems, increasing quality of patient care

In 2016, in the framework of the celebrations for the X European Patients’ Rights Day, Active Citizenship Network has carried out a research in order to gather good practices: concrete examples of actions aimed at reducing waste and inefficiencies in healthcare (waste caused, for example, by: unnecessary services; excessive administrative costs; inefficiently delivered services; prices set too high; fraud; missed prevention opportunities etc.. ) experienced in EU and no EU countries.

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PATIENTS’ RIGHTS HAVE NO BORDERS…AS WELL AS RISKS!

 May 3rd 2016, 16:30 - 18:30
Room ASP A7H1 - European Parliament, Brussels 

Interpreting available (IT - EN) 

Programme

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“European Civic Prize on Chronic Pain - Collecting Good Practices"

Active Citizenship Network has launched the project ”EU Civic Prize on Chronic Pain - Collecting good practices”. The aim is to give evidence of existing good practices in  European countries in terms of struggle against pain.

The establishment of a “European Civic Prize on Chronic Pain”, based on the  selection of the practices presented by different healthcare stakeholders (patients’ associations, health professionals, private and public hospitals, universities, etc.) provides an occasion for demonstrating what this community can offer in terms of good practices and experiences which are useful in raising awareness about the condition, enhancing the body of knowledge of positive cases and success, and strengthening commitment to this topic.

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EUROPEAN PATIENTS’ RIGHTS DAY 2016

10th  European Patients’ Rights Day

Reducing waste and inefficiency in the healthcare systems, increasing quality of patient care

The 2016 European conference of the European Patients’ Rights Day focused on the fight against waste and inefficiency in healthcare systems in Europe and on the best practices to increase the efficacy and the quality of patient care.
It has been held on Wednesday, May 4th in Brussels at the European Parliament co-hosted by MEP David Borrelli, co-Chair of the EFDD Group and MEP Pier Nicola Pedicini, EFDD ENVI Committee Coordinator. The participants were leaders of civic and patient organizations coming from 25 Countries, some of them outside the European Union, such us Albania, Russia, Macedonia, Switzerland. With them, many representatives and leaders of 18 networks at EU level, professionals and experts, companies and providers, public relation agencies and other relevant stakeholders.

During the conference has been analyzed what has been done and what is been doing about it all around Europe and what is the role and the contribution of public and private sectors on it, as well as the ones of the civic society and patient organizations. It has been be also distributed the report of the European research carried out to find the good practices in this context. Some of the gathered good practices were showed and discussed.

The registration of the entire event could be seen here

The biographies of the speakers can be read here

Here below the programme and all the showed presentations:

10th  European Patients’ Rights Day

Reducing waste and inefficiency in the healthcare systems, increasing quality of patient care

4 May 2016, 09:30 - 13:30
European Parliament, Brussels - Room ASP A1E2

PROGRAMME

Chair: Neil Betteridge - independent health consultant

09:30 - 10:00 Opening Remarks and keynote Presentations

MEP David Borrelli - Co-Chair of the Europe of Freedom and Direct Democracy Group
MEP Piernicola Pedicini - EFDD ENVI Committee Coordinator
Mariano Votta - Director of Active Citizenship Network

10:00 - 10:40 Overview

‎Stéphane Vandam - Public Health Officer of World Health Organization
Paul Vincke - Managing Director of European Healthcare Fraud and Corruption Network
Cristiana Montani Natalucci - Italian Tribunal for Patients’ Rights, Italy

10:40 - 11:40 The good practices about transforming health care overcoming inefficiencies and waste (1st PART)

The power of Technology :

No Delays: transforming delivery of health services and reducing reliance on traditional clinical interactions”- Jamie Hogg - Clinical Lead for Modernisation, NHS Grampian, Scotland
“National Development of Electronic Cancer Referral System in the Republic of Ireland”-  Eileen Nolan Shortiss - National Cancer Control Programme, Ireland
“Use of a software to optimize the surgical process and to assure traceability of procedures in a high throughput orthopedic hospital” - Giuseppe Banfi - Scientific Director of IRCCS Galeazzi, Italy

Questions and answers

 The power of a better organizational management:

“How does lean work in emergency care?”- Pamela Mazzocato - Medical Management Centre “Karolinska Institutet”, Sweden
“NHS Future Focused Finance (FFF) programme” - Virginia Minogue - Research lead, FFF programme, England

Questions and answers

11:50 - 12:30 The good practices about transforming health care overcoming inefficiencies and waste (2nd PART)

 The power of Patient Engagement:

“PDTA: assistential and diagnostic-therapeutic paths “- Salvatore Leone - Amici Onlus, National Coalition of Associations for Patients suffering Chronic Diseases (CnAMC), Italy

The power of network:

“How can we use the “CHAIN” to increase value and reduce waste?” - David Evans - Contact, Help, Advice and Information Network (CHAIN), UK

Questions and answers

12:15 - 13:00 Round table:  

MEP Giovanni La Via - EPP (video message)

Bert Van Caelenberg - Vice President of Health First Europe

Douglas Gregory - Member of EFPIA Heath Systems Working Group

Maarten de Wit - European League Against Rheumatism (EULAR)

Antonio Longo - European Economic and Social Committee

13:00 - 13:15 Questions & Answers

13:15 - 13:30  Vytenis Andriukaitis - European Commissioner for Health and Food Safety

 13:30 Closing Remarks

Antonio Gaudioso - Secretary General of Cittadinanzattiva

For more information on the European conference and the Good Practices collection please write to Daniela Quaggia This email address is being protected from spambots. You need JavaScript enabled to view it.

Take action!

Please give us your feedback on the conference by filling in this brief  on line questionnaire and tell us the topic you would you like to suggest for the next European Patients’ Rights Day! 

The conference is realized thanks to the support of:

ENS4Care: Evidence Based Guidelines for Nurses and Social Care Workers for the deployment of eHealth services

Project Description
In 2014/2015 Active Citizenship Network has been one of the partner of the ENS4Care project:

ENS4Care is a Thematic Network gathering together 24 partners from all over Europe. Its main objective is to share good nursing and social work practices in eHealth services and, through evaluation and consensus building, create a set of guidelines on healthy lifestyle and prevention, early intervention and clinical practice, integrated care, skills development for advanced roles and nurse ePrescribing.

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ENS4CarePartners

1. European Federation of Nurses Associations (EFN) – Belgium
The EFN was established in 1971. The EFN represents 34 National Nurses Associations and its work has an effect on the daily work of 6 million nurses throughout the European Union and Europe. The EFN is the independent voice of the nursing profession and its mission is to strengthen the status and practice of the profession of nursing for the benefit of the health of the citizens and the interests of nurses in the EU & Europe. The EFN is the project coordinator of the ENS4Care Thematic Network. It leads WP1 – Project Coordination and Management of the consortium.

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