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 BURQOL-RD was funded by the European Union in the framework of the Health Programme and it was coordinated by the Fundación Canaria de Investigación y Salud (FUNCIS) in 2010-2013.
The main aim of BURQOL-RD was to develop a disease based model (instrument) to assess the impact of new health policies, interventions and treatments in the field of rare diseases (RDs) by means of quantifying the Economic Burden and Health-Related Quality of Life (HRQOL) for patients and their caregivers, from a macro societal perspective.
Besides, this instrument could be used to recognise, improve and update our knowledge of the socioeconomic impact of RDs in the European Union (both the direct and indirect costs), and their self-perceived health outcomes.


Pubblicato il 31-10-2014 in Progetti e attività Internazionali , aggiornato al 03-11-2014 Leggi...



 EPIRARE (European Platform for Rare Disease Registries) is a three-year project co-funded by the European Commission within the EU Program of Community Action in the field of Public Health. EPIRARE started officially on April 15, 2011.


The interest of researchers in the establishment of disease registries, is shown by the increasing number of RD registers in EU Member States as national or local initiatives mainly located at universities (Orphanet, 2009). Applications for funding RD networks, promoting data sharing and collaboration among researchers, are also submitted regularly to the European Commission.
The need for shared quality data collections for different health and healthcare purposes and the awareness of difficulties posed by their...

Pubblicato il 30-10-2014 in Progetti e attività Internazionali , aggiornato al 03-11-2014 Leggi...



Rare diseases represent an important public-health issue, affecting 26-30 million persons across Europe, and a major challenge for research.

The fragmentation of resources and knowledge for the 6000-8000 rare diseases and the lack of treatment for the majority of them necessitate a coordinated European approach to unravel the underlying molecular defects and pathophysiological mechanisms.
The low number of affected patients requires transnational collaboration with multidisciplinary approaches to map prevalences, build patient registries, identify biomarkers, develop new diagnostics and finally perform clinical studies for the development of treatments.

The successful linking of research funding organisations in E-Rare-1 and the subsequent exemplary joint...

Pubblicato il 29-10-2014 in Progetti e attività Internazionali , aggiornato al 05-11-2014 Leggi...



EU Tender on EU Newborn Screening Practices

As a result of a tender launched by the European Commission, an activity has started with the aims of identifying and evaluating all aspects deemed relevant to the implementation of a public health action in newborn screening (NBS), taking into consideration the views of professionals, patients and health authorities.
Newborn screening practices and policies will be mapped in the whole European Union and analysed on the basis of current expert methodologies and stakeholders’ views. Within the perspective that NBS is implemented as a public health initiative, a range of aspects will be considered, which ensure the feasibility and sustainability of the screening program and its efficacy in improving population health, as well as patient care and quality of life....

Pubblicato il 28-10-2014 in Progetti e attività Internazionali , aggiornato al 03-11-2014 Leggi...



EUROCAT Joint Action (2011-2013)

The EUROCAT (European Network for surveillance of Congenital Anomalies) Joint Action (JA), funded by the Public Health Programme 2008-2013 of the European Commission started on January 1st 2011.

This JA combines funding of the EU and Member States (MS) in order to secure a sustainable, high quality and easily accessible information system on Congenital Anomalies (CA) for almost one third of the European birth population. The results are expected to have an important impact on future member state policy on rare diseases.

EUROCAT JA has among its main goals the improvement of surveillance and the identification of strategies for primary prevention of CA.
It encompasses 36 Associate Partners, 9 Collaborating Partners and is structured into 9 Work Packages...

Pubblicato il 27-10-2014 in Progetti e attività Internazionali , aggiornato al 03-11-2014 Leggi...


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