Chronic Diseases / Projects

Second Programme of Community action in the Field of Health 2008-2013
European Porphyria Network: providing better healthcare for patients and their families [APHP-EPNET_FY2012]
Our mission is to improve the lives of porphyria patients by improving the diagnosis and treatment of these rare conditions. EPNET has been funded by the EU Commission (DG SANCO, PHEA programme)since ...
Our mission is to improve the lives of porphyria patients by improving the diagnosis and treatment of these rare conditions. EPNET has been funded by the EU Commission (DG SANCO, PHEA programme)since 2007. The objective is to establish an effective network of specialist porphyria centres throughout the EU. Currently, EPNET consists of 28 EU specialist centres from 17 European countries that work together to develop an up-to-date approach to the management of patients and families with porphyria that conforms to uniform standards. We also have members from Australia, New Zealand, South Africa and the USA.
Evidence from the last years shows that this network and its activities have a positive effect on the quality of diagnosis, number of patients diagnosed and treatment choices (shown through the collection of data, enquiries to the drug database and external quality scheme). However, porphyria centres and/or clinical experts are still not present in all EU countries; therefore the care is not equal in all member states. An objective for 2012 will be to work with national plans, the laboratory network and the cross boundary directive to find a method to reach out to patients in countries currently outside EPNET e.g. Bulgaria, Greece, Portugal, Croatia and others.
EPNET focuses on: provision of information to patients (in their own languages) and healthcare professionals (HCPs); use of external quality assessment to develop quality standards for diagnosis and clinical advice; a web-based registry to collect data about the porphyrias to inform clinical practice and healthcare planning; dissemination of information on safety of drugs. Progress is communicated to partners through regular meetings and reports. Information on the porphyrias and drug selection is made available to patients, public health authorities and HCP`s at www.porphyria-europe.org; www.drugs-porphyria.org.
Start date: 01/01/2012 - End date: 01/01/2013

Call: Promote Health (Hp-2010)
Topic: Chronic Diseases
Second Programme of Community action in the Field of Health 2008-2013
The European Wilson's Disease Network [AP-HP-WILS_FY2012]
EuroWilsoN`s (EW) mission is to improve quality of care and access to multi-disciplinary expertise for EU patients with Wilson`s disease (WD). EW was founded in 2004 through the FP6 programme(EW (LSHM...
EuroWilsoN`s (EW) mission is to improve quality of care and access to multi-disciplinary expertise for EU patients with Wilson`s disease (WD). EW was founded in 2004 through the FP6 programme(EW (LSHM CT2004 503430), and is currently funded by the European Commission Directorate General for Health and Consumers operating grant 2010. It has achieved:

- A European multidisciplinary network for sharing expertise in patient management. A multidisciplinary approach is particularly necessary in WD which has variable clinical manifestations
- A network composed of all stakeholders concerned by WD: clinicians, research scientists, patients, patient organisations, regulatory authorities and industry
- A WD patient registry collecting longitudinal data
- External molecular quality network
- Contribution to the development of recent guidelines
- A structure for patient groups to network and share experience

EW`s goals include maintaining and enhancing this network; the French centre of expertise for WD serves as a network model. The network includes all stakeholders involved in patient care: medical, scientific para-medical, EU authorities and patients` associations. EW will:

- Promote exchange between participants
- Provide up-to-date disease information on its website (eurowilson.org) and Orphanet
- Develop and publish evidence based clinical guidelines
- Develop telemedicine within the network
- Enhance the registry to provide epidemiological data, outcome indicators, country comparisons and to facilitate collaborative research and public health projects
- Support patients and patient associations in the EU
- continue to serve as a research and knowledge centre for WD

Members of Eurowilson are actively participating in European and international activities with the aim to transfer knowledge from this network to other networks, patient regsitries and to national authorities and policy makers. We serve the European Committee of Experts in Rare Disease (EUCERD) and the International Rare Disease Research Consortium (IRDiRC).
Start date: 01/01/2012 - End date: 01/01/2013

Call: Promote Health (Hp-2010)
Topic: Chronic Diseases
Second Programme of Community action in the Field of Health 2008-2013
AE_FY2014_FY2013 [AE_FY2014]
Alzheimer Europe (AE) defines its mission as "changing perceptions, practice and policy in order to improve the access of people with dementia and their carers to treatment options and care services"....
Alzheimer Europe (AE) defines its mission as "changing perceptions, practice and policy in order to improve the access of people with dementia and their carers to treatment options and care services". In addition, the organisation has defined its guiding philosophy as "promoting the autonomy and self-determination of people with dementia and their carers throughout the course of the disease".
To achieve its mission and accomplish its vision, Alzheimer Europe has developed four objectives in its strategic plan (2011-2015) which was developed within the framework of its 2010 Operating Grant:
1. Making dementia a European priority through representing the interests of people with dementia, partnering with European institutions and jointly developing policy;
2. supporting policy with facts by improving the information exchange between AE, its members and other stakeholders, by setting up a European Dementia Observatory and by comparing national systems and identifying best practices;
3. basing our actions on ethical principles by understanding ethical principles and approaches, promoting a rights-based approach to dementia and finding common ground and building consensus on ethical issues;
4. building a stronger organisation by supporting and involving national associations, involving people with dementia and their carers, establishing AE conferences as unique networking opportunities, developing strategic partnerships, providing a sound governance structure and diversifying the organisation`s funding.
On the basis of these strategic objectives, Alzheimer Europe develops annual work plans outlining the priority areas and projects of the organisation.
Start date: 01/01/2013 - End date: 01/01/2014

Call: Promote Health (Hp-2013)
Topic: Chronic Diseases
Second Programme of Community action in the Field of Health 2008-2013
EPF_FY2013 [EPF_FY2013]
Our mission is to be the collective patients voice at EU level, manifesting the solidarity, power and unity of the EU patients movement, and provide a strong and united patients voice to put patients ...
Our mission is to be the collective patients voice at EU level, manifesting the solidarity, power and unity of the EU patients movement, and provide a strong and united patients voice to put patients at the centre of EU health policy and programmes.
Our vision is patient-centred, high quality, equitable healthcare for all patients throughout the EU.
Core values/guiding principles as agreed in the Strategic Plan:
-We are patient-centred and right-based
-We combat discrimination on the grounds of illness and address health inequalities from the perspective of patients
-We advocate a holistic approach to healthcare issues that includes the social, economic, cultural, environmental and mental health agenda for patients, carers and families
-We foster the empowerment of patients, carers and their families by breaking down attitudinal barriers and prejudice regarding patients place in society as equal citizens
-We consult and build consensus within our membership to address the EU policy issues that have an impact on the patient community
-We are an independent organisation, transparent in all our operations-financial, policy, communications
-We are an open and inclusive organisation and strive to ensure that our work also reflects the opinion of potentially marginalised and under-represented patients, carers and families
-We have a strong commitment to gender equality
-We encourage effective, inclusive and sustainable patient organisations throughout the EU
-We are committed to giving a voice to underrepresented patients, including young patients and reaching out to all ethnic and cultural patient groups
-With regard to ethical issues, EPF respects recognised European and International instruments protecting human rights.
These core values lie at the heart of our organisation - they define who we are, how we work and what we stand for. They not only inform our advocacy/campaign and programme work, but also guide the way we build alliances and partnerships. Our communication strategy ensures that these values are effectively shared with the patient community
Start date: 01/01/2013 - End date: 01/01/2014

Call: Generate And Disseminate Health Information And Knowledge (Hi-2012)
Topic: Chronic Diseases
Second Programme of Community action in the Field of Health 2008-2013
Eurocare_FY2013 [Eurocare_FY2013]
The European Alcohol Policy Alliance (Eurocare)is one of the leading independent NGOs working on alcohol policies in Europe. It is an alliance of about 50 public health organisations from 23 European ...
The European Alcohol Policy Alliance (Eurocare)is one of the leading independent NGOs working on alcohol policies in Europe. It is an alliance of about 50 public health organisations from 23 European countries dedicated to the prevention and reduction of alcohol related harm. Member organisations are involved in advocacy and research, as well as in the provision of information and training on alcohol issues, and the provision of services for peoples whos lives are affected by alcohol related problems.

Eurocare`s vision is a Europe where alcohol related harm no longer is one of the leading risk factors for ill-health, early death, violence and disability, where innocent third parties no longer suffer from the drinking of others and where the EU and its Member States acknowledge the harm done by alcohol and implement effective and comprehensive policies to tackle it.

The mission of Eurocare is to raise awareness among decision makers of the harms caused by alcohol and to ensure that these are taken into consideration in relevant EU policy discussions, as well as to promote the development and implementation of evidence based policies and effectively preventing and reducing the burden brought in by alcohol.

To achieve its mission Eurocare seeks to; influence policy makers, establish collaboration with other organizations sharing our concerns, advocate effective and evidence based alcohol policies, monitor relevant policy developments, monitor marketing practices of the alcohol industry, disseminate information and knowledge through reports, position papers,web site and newsletter.

Our message in regards to alcohol consumption is "less is better".


Start date: 01/01/2013 - End date: 01/01/2014

Call: Promote Health (Hp-2012)
Topic: Chronic Diseases