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Monthly Newsletter edited by Cittadinanzattiva-Active Citizenship Network
Civic Activism | Patients' Rights | Consumers' Rights | Support ACN


Year 3th, number 22 - June 2013


Special edition of ACN newsletter dedicated to the Brussels celebration of the VIII European Patients’ Rights Day:
"The role of citizens' organisations in the empowerment of patients with chronic diseases"
Highlight

Towards an International Patients’ Rights Day? ACN Director
More than 120 participants representing as many as 32 countries. Mostly of them was leaders of civic and patients associations, but also many health professionals and institutions, private companies, consulting firm specializing in European policies, university etc. The countries represented were not only EU countries, but also, for example, Kosovo, Ukraine. Thanks to the presence of experts from the U.S., Canada and India, there were representatives from three continents. Whether it's a signal for an International Patients' Rights Day and not just European? Read more

More information:
The History of the European Patients’ Rights Day

Focus

Tonio Borg "Every Day should be Patients’ Rights Day!"
The Health Commissioner Tonio Borg recorded a video message in occasion of the  VIII European Patients’ Rights Day. He highlighted the important role of patients’ organisations and stated that although there is no consensus among EU countries about patient empowerment, it means ensuring they are fully informed and in control of their own health care. See the full video message here, read his "personally speaking" and the official press release

Empowered patients are a resource!
“The role of civic organizations in the empowerment of patients with chronic diseases has been underestimated for too long. It is important that policy makers let organizations and patients actively partecipate in the management of chronic diseases. Not only  to better their cure, but to cope with the caring, social, relational and psychological impacts of their disease”. Read the declarations of Antonio Gaudioso, Secretary general of Cittadinanzattiva in our press release

Day 1

Empowerment: “Chronic diseases’ networks added value in policy making
The speakers examined the different chronic disease networks successful experiences and their impacts on political decision making with examples of activities and objectives European networks can develop and achieve with a unified voice of different organisations. Read more

Empowerment in chronic diseases: best practices in a Report
One of the objective of the conference was to share best practices (BP) of different citizens and patients’ organisations on the two dimensions of patient’s empowerment, as defined by ACN:
- Improvement of a person’s capabilities to effectively self-manage his/her chronic disease; 
- Enhancement of patient groups’ capacities to participate efficiently in health policies. 
We have collected 28 BP coming from 17 different Countries. Download the Report and read some presentations

Empowered patients are a resource” an European MANIFESTO!
The Associations who participated in the conference called for new Members of the European Parliament and all European Institutions to support civic and patient organizations in their activities of Self-management & Education, Participation & Evaluation, Cooperation, Innovation, Information & Communication by producing a Joint declaration to improve the empowerment of citizens with chronic and rare diseases and their organizations. Read the MANIFESTO and the Subscriptions

Day 2

Research and responding to growing societal challenges
The panel and discussion of the second day of the conference considered the importance of engaging the patient voice in the formulation and support of national and international policies that promote pharmaceutical  and other medical research that leads to new preventions, treatments and  cures for chronic diseases for which there are few, if any adequate treatments and cures. Read more

More information:
Patients’ Needs, Medicines Innovation and the Global Public’s Interests by David Taylor, Professor of Pharmaceutical and Public  Health Policy, UCL School of Pharmacy and chairman of the second day of the VIII European Patients’ Rights Day. 

Articles and press releases

The right to be supported to self manage disease
Read the article written by Tessa Richards, senior editor/patient partnership, BMJ, who attended the VIII European Patients’ Rights Day.

10 benefits the EU brings to patients
On the occasion of European Patients’ Rights Day, the European Commission issued a statement listing 10 benefits patients may enjoy due to existing EU legislation. Read more

European Patient Right Day: local initiatives
As every year, the European Patients 'Rights Day was celebrated by the local branches of the Tribunal for Patients' Rights in about 70 Italian cities. The European Charter of Patients' Rights has been distributed in different events (seminars, street meeting, open days of the local headquarters etc..). The Italian celebration has been realized also thanks to an unrestricted educational grant from Johnson & Johnson Medical. Download the press coverage

 

This Publication arises from the project "The role of citizens' organisations in the empowerment of
patients with chronic diseases (ECHRODIS)" wich has received funding from the European Union in the framework of the Public Health Programme.

The sole responsibility of the content lies with the authors

This event has been made possible also thanks to an unrestricted educational grant from the platinum sponsors:

 novartis logo
pharma logo 2014 
pfizer logo



UNDER THE PATRONAGE OF



European Economic and Social Committee

 

Credits
Director and Editor in chief: Mariano Votta
Editors: Daniela Quaggia
Coordination and Production: Giacomo D'Orazio 
We thank "Expert network EU4U" for collaboration

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