Collection of Best Practices / Projects

Second Programme of Community action in the Field of Health 2008-2013
The European Multiple Sclerosis Platform [EMSP_FY2012]
Founded in 1989, EMSP is the umbrella organisation representing 38 national MS societies from 34 European countries. EMSP represents their interests at European level and works collectively with its m...
Founded in 1989, EMSP is the umbrella organisation representing 38 national MS societies from 34 European countries. EMSP represents their interests at European level and works collectively with its members to achieve our goals of high quality equitable treatment and support for all people with Multiple Sclerosis (PwMS) throughout Europe.

EMSP vision is to move from high quality treatment and support for all PwMS in Europe to a world without MS.

EMSP`s mission is to ensure the development and the implementation of high quality standards of treatment and support for PwMS, their families and their carers in all EU member states, to allow them to lead their life independently and to recognise them as equal members of the society.

EMSP work priorities to achieve this mission are to:
- influence EU institutions and other decision-making bodies to improve the quality of life of PwMS;
- network with other European organisations which share of vision of truly patient centred approach;
- provide MS member organisations with information on relevant EU draft legislation and how we can influence it, and evidence - based projects that will contribute to their work;
- develop and promote recommendations for improved medical treatment and rehabilitation to be implemented in the EU member states and other countries;
- encourage coordinated research aiming to benefit of PwMS;
- initiate and implement cross-border projects to improve the living conditions of PwMS (e.g. in the field of therapies, employment, social security, infrastructure, etc.);
- act as information platform by exchanging knowledge and best practices relevant to the work of the national MS member organisations;
- enhance a general awareness on MS by informing and educating external audiences;
- and to support national MS Societies both recent and long-established in Europe.
Start date: 01/01/2012 - End date: 01/01/2013

Call: Generate And Disseminate Health Information And Knowledge (Hi-2010)
Topic: Collection of Best Practices
Second Programme of Community action in the Field of Health 2008-2013
Stichting Aids Fonds - Soa Aids Nederland [SANL_FY2012]
Stichting Aids Fonds - Soa Aids Nederland (SANL) is host organisation of the network AIDS Action Europe (AAE). SANL is a national organisation involved in STI/HIV control and sexual health promotion. ...
Stichting Aids Fonds - Soa Aids Nederland (SANL) is host organisation of the network AIDS Action Europe (AAE). SANL is a national organisation involved in STI/HIV control and sexual health promotion.
AAE`s mission is to unite civil society to work towards a more effective response to the HIV epidemic in Europe and Central Asia. We strive for better protection of human rights and universal access to prevention, treatment, care and support. We work towards a reduction of health inequalities focussing on most at risk populations and the epidemic in Central and Eastern Europe and Central Asia.
As regional network of ICASO (International Council of AIDS Service Organizations), AAE is part of ICASO`s mission to mobilize and support diverse community organizations to build an effective global response to HIV and AIDS. This is done within a vision of a world where people living with and affected by HIV and AIDS can enjoy life free from stigma, discrimination, and persecution, and have universal access to prevention, treatment, care and support.
AAE`s core values: be accountable and hold others accountable; be transparent; be inclusive; put in practice the GIPA principle (greater involvement of people living with HIV); work from a human rights based approach; facilitate a networking and partnership culture; be cost-effective; make a difference.
Our mission is communicated through our website, in leaflets, works plans and annual reports.

Start date: 01/01/2012 - End date: 01/01/2013

Call: Promote Health (Hp-2010)
Topic: Collection of Best Practices
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: Collection of Best Practices
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: Collection of Best Practices
Second Programme of Community action in the Field of Health 2008-2013
UNEW_FY2013 [UNEW_FY2013]
TREAT-NMD is an international network for rare inherited neuromuscular disorders (NMDs). Its mission is to provide an infrastructure to increase collaboration between clinicians, scientists, and patie...
TREAT-NMD is an international network for rare inherited neuromuscular disorders (NMDs). Its mission is to provide an infrastructure to increase collaboration between clinicians, scientists, and patients, accelerate therapy development for these incurable conditions, improve patient care through publication and dissemination of best-practice consensus guidelines, and provide reliable information for patients and professionals. TREAT-NMD was established in 2007, and until the end of 2011, was funded through FP6 to bring together stakeholders representing all NMDs (>200 diseases). Although NMDs are individually rare, TREAT-NMD activities address ~200,000 patients in the EU, and ~3 million worldwide.
Since 2007 TREAT-NMD has increased the collaborating capacity of the field, raised the profile of NMDs within the wider rare disease (RD) field, become a model for RD collaboration, and increased the profile of European NMD research and healthcare globally. A public consultation in 2010 strongly endorsed the continuation and further development of TREAT-NMD`s core activities.
The TREAT-NMD Alliance has extended beyond the original network members to integrate new participants from around the world. The original number of ~350 scientists and clinicians that were integrated into the network through the 22 partners has now more than doubled and constitutes a critical mass for innovation and harmonisation in NMD care and research globally.
TREAT-NMD outputs:
-highly developed communication/dissemination infrastructure with extensive website and newsletter
-network of over 270 NMD care and trial sites
-global patient registries for several NMDs with >20,000 patients
-range of preclinical resources
-tools supporting translational & clinical research
TREAT-NMD vision:
-enhance European excellence in the NMD field
-increase visibility & recognition of NMDs in national health policy
-sustain core resources and added value of networking developing tools that cannot be maintained by individual research projects
-extend networking activities and resources to new experts worldwide
Start date: 01/01/2013 - End date: 01/01/2014

Call: Generate And Disseminate Health Information And Knowledge (Hi-2012)
Topic: Collection of Best Practices