Newsletter
Utilities
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.
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.
“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
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Download the Hungarian leaflet Download the Lithuanian leaflet Download the Portuguese leaflet |
“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.
“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.
“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.
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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.
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.
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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