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.

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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.

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“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

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.
This email address is being protected from spambots. You need JavaScript enabled to view it.

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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