Survey / Projects

First Programme of Community action in the field of public health (2003-2008)
Alert on new recreational drugs on the web; building up a European-wide digital Early Warning System [Psychonaut EWS]
The strategic objectives of this project include a regular monitoring of the web in respect of novel recreational drugs and prompt implementation of a technical database on novel recreational psychoac...
The strategic objectives of this project include a regular monitoring of the web in respect of novel recreational drugs and prompt implementation of a technical database on novel recreational psychoactive compounds/combinations, with the resulting data being made available to the European Monitoring Centre for Drugs and Drug Addiction’s (EMCDDA) early warning system for possible dissemination to selected health professionals and health agencies.
Start date: 01/01/2008 - End date: 01/01/2010

Call: Health Determinants (Hd 2006)
Topic: Survey
Second Programme of Community action in the Field of Health 2008-2013
Scientific support to the Rare Disease Task Force activities [RDTF scientific support]
The objective is to promote action on the prevention of rare diseases (RD) and to provide analysis and technical assistance in support of the development or implementation of a policy in the area of r...
The objective is to promote action on the prevention of rare diseases (RD) and to provide analysis and technical assistance in support of the development or implementation of a policy in the area of rare diseases and orphan drugs (OD).
Start date: 01/01/2009 - End date: 01/03/2012

Call: Promote Health (Hp-2008)
Topic: Survey
Second Programme of Community action in the Field of Health 2008-2013
EURORDIS_FY2010 [EURORDIS_FY2010]
EURORDIS is a patient-driven alliance of Patient Organisations (POs) and individuals active in the field of rare diseases (RD). It represents the voice of an estimated 29 million citizens in the EU.
...
EURORDIS is a patient-driven alliance of Patient Organisations (POs) and individuals active in the field of rare diseases (RD). It represents the voice of an estimated 29 million citizens in the EU.

EURORDIS mission is to build a strong pan-European community of POs and People Living With RD (PLWRD), to be their voice at the European level and to fight against the impact of RD on their lives.

To this end, EURORDIS undertakes activities on behalf of its members, notably in favour of:

• Empowering RD patient groups
• Advocating RD as a public health priority
• Raising public awareness on RD (national and international levels)
• Improving access to information, treatment, care and support for PLWRD, including support to families
• Improving quality of life
• Encouraging good practices in relation to these issues
• Promoting scientific and clinical research on RD
• Developing treatments and drugs for people with RD

EURORDIS plays a pivotal role in the definition and implementation of the EU strategy on RD (EC Communication, Dec.2008 and Council Recommendations, June 2009).
Start date: 01/01/2010 - End date: 01/01/2011

Call: Promote Health (Hp-2009)
Topic: Survey
Second Programme of Community action in the Field of Health 2008-2013
SSI_FY2013 [SSI_FY2013]
Measures of mortality are among the most important indicators for public health. All European Union member states collect all-cause mortality data in order to facilitate planning, monitoring annual tr...
Measures of mortality are among the most important indicators for public health. All European Union member states collect all-cause mortality data in order to facilitate planning, monitoring annual trends of diseases and evaluating public health interventions. However, there is little tradition of conducting timely monitoring of mortality. This lack of timely collection, analysis and interpretation is a limitation when it comes to the assessment of the health impact of events that may lead to sudden changes in mortality such as major epidemics, extreme temperatures as well as deliberate or accidental release of biological or chemical agents.
In the DG Sanco supported project EuroMOMO we developed a coordinated approach to real-time mortality monitoring across Europe. This system is ready to apply among countries that are able to meet the minimal requirements for mortality monitoring. Currently, the weekly output (the mortality bulletin at www.euromomo.eu) is based on data submitted from 15 countries.
The EuroMOMO network demonstrated how a timely, standardised and coordinated approach to mortality monitoring increases the European capacity to assess the impact of events with a potential impact on public health, including the 2009/10 influenza A(H1N1) pandemic. Without EuroMOMO, Europe would have been less well prepared for the pandemic
In addition, EuroMOMO was pivotal to facilitate country-specific in-depth analyses of influenza-associated mortality in general or the impact of the pandemic more specifically.
Our mission is to reinforce the EU`s preparedness to respond to potential risk by a continued operation of the EuroMOMO network. The vision is further to extent the collaboration by adding new countries to the network. By training activites, partners will learn and exchange best practice on how to apply data from real-time mortality monitoring for risk assessment, in particular as regards cross-border threats and the management of the public health response to emergencies.
Start date: 01/01/2013 - End date: 01/01/2014

Call: Improve Citizen''S Health Security (Hs-2012)
Topic: Survey
Second Programme of Community action in the Field of Health 2008-2013
INSERM_FY2014 [INSERM_FY2014]
Orphanet is the world-reference portal dedicated to information on rare diseases (RD) and orphan drugs (OD) It was created in 1997 at the French National Institute of Health and Medical Research in Pa...
Orphanet is the world-reference portal dedicated to information on rare diseases (RD) and orphan drugs (OD) It was created in 1997 at the French National Institute of Health and Medical Research in Paris. It is coordinated by INSERM US 14 and the network involves now 38 countries.
The overriding aim of ORPHANET is to provide the community at large with a comprehensive set of information on RD and OD and attached services in Member States, to contribute to the improvement of the diagnosis, care and treatment of patients with RD.
Orphanet includes an inventory of 6000 RD, an encyclopaedia in 6 languages, a directory of health professionals (17000), expert clinics (5600), medical laboratories (1600), clinical trials (1700), research projects (4500), networks, registries (1300), patient organisations (2400), and information on OD and on drugs intended for rare diseases. All the MS have now an Orphanet national website published in their national language(s). The encyclopaedia of RD is available in English, French, German, Italian, Spanish, and Portuguese,Dutch, and for some diseases in Finnish, Greek and Polish. The portal is accessed daily by over 20,000 users from over 200 countries. Half of them are regular users. More than 10,500,000 documents are downloaded every year.
Orphanet has been developed through several rounds of funding, to include EU co-funding alongside other resources. In its current development phase, the network aims to develop tools for the partners as to empower them to collect data at national level and publish them, and in general tools to upgrade the quality of the database and ease its update and validation. In addition, the current 2014 work plan requires further work on the inventory and classification of RD, which has proven difficult due to delays in the overall review of the International Classification of Diseases.
Currently, Orphanet is co-funded through the ORPHANET Europe JA (alongside other funding sources –see section 1.5.5.). The activities which are included in the ORPHANET 2014 Operating Grant do not in any way overlap with those that are implemented through the Joint Action, which ends on 30/03/2014.



Start date: 01/01/2014 - End date: 01/01/2015

Call: Generate And Disseminate Health Information And Knowledge (Hi-2013)
Topic: Survey