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Platform for sharing best practices for management of rare diseases

Objective

RARE-Bestpractices will develop a sustainable networking platform, supporting the collection of standardized and validated data and efficient exchange of knowledge and reliable information on rare diseases (RD).
RD are characterized by low prevalence (EU – 5:10000 persons). There are more than 5000, overall affecting about 30 million citizens of all ages in the EU. RD are often life-threatening and chronically debilitating, and healthcare is impaired by limited knowledge.
Collaborative efforts are needed to tackle RD to prevent significant morbidity, perinatal or early mortality, to reduce socio-economic burdens and to improve an individual’s quality of life.
RARE-Bestpractices aims to improve clinical management of RD patients, narrowing the existing gap among EU MS and other countries, also considering the application of patients’ rights in cross-border healthcare (EU Directive 2011/24).
The platform deals with RD as a global health issue, exploiting and integrating contributions from all EU MS and other world areas (Caucasus, Europe, America, Oceania, PAHO/WHO) and will identify additional research needs to further improve clinical practice.
Fostering synergistic collaboration among experts, patients representatives, policy makers, institutions, agencies, and other organizations experienced in systematic reviews and guidelines production, RARE-Bestpractices will focus on:
a) collection, evaluation and dissemination of existing best practices;
b) an agreed methodology suitable to develop and update best practice guidelines;
c) training activities targeted at key stakeholders to spread expertise and knowledge; and
d) a forum for exchanging information, sharing lessons learnt, and facilitating collaborations.
The platform is conceived for health care providers, experts, patients, policy makers and best practice guideline developers with outcomes that support closure of healthcare gaps among countries and improved clinical management of RD patients globally.
Leaflet | Map data © OpenStreetMap contributors, Credit: EC-GISCO, © EuroGeographics for the administrative boundaries

Coordinator

ISTITUTO SUPERIORE DI SANITA

Address

Viale Regina Elena 299
00161 Roma

Italy

Activity type

Research Organisations

EU Contribution

€ 653 477,21

Administrative Contact

Rosa Maria Martoccia (Dr.)

Participants (16)

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FUNDACION CANARIA DE INVESTIGACION Y SALUD

Spain

JAMARAU

United Kingdom

EU Contribution

€ 210 000

KAROLINSKA INSTITUTET

Sweden

EU Contribution

€ 63 800

HEALTHCARE IMPROVEMENT SCOTLAND

United Kingdom

EU Contribution

€ 120 634,43

LONDON SCHOOL OF ECONOMICS AND POLITICAL SCIENCE

United Kingdom

EU Contribution

€ 121 304,36

CONSIGLIO NAZIONALE DELLE RICERCHE

Italy

EU Contribution

€ 95 000

EURORDIS - EUROPEAN ORGANISATION FOR RARE DISEASES ASSOCIATION

France

EU Contribution

€ 168 000

Associazione per la Ricerca sulla Efficacia della Assistenza Sanitaria Centro Cochrane Italiano

Italy

EU Contribution

€ 100 000

UNIVERSITAETSKLINIKUM FREIBURG

Germany

EU Contribution

€ 176 200

BULGARIAN ASSOCIATION FOR PROMOTION OF EDUCATION AND SCIENCE

Bulgaria

EU Contribution

€ 60 584

SERVICIO CANARIO DE LA SALUD

Spain

EU Contribution

€ 61 000

UNIVERSITEIT MAASTRICHT

Netherlands

EU Contribution

€ 40 000

UNIVERSITY OF NEWCASTLE UPON TYNE

United Kingdom

EU Contribution

€ 40 000

EUROPEAN ACADEMY OF PAEDIATRICS AISBL

Belgium

EU Contribution

€ 30 000

INSTITUTO DE SALUD CARLOS III

Spain

EU Contribution

€ 60 000

FUNDACION CANARIA DE INVESTIGACIONSANITARIA (FUNCANIS)

Spain

Project information

Grant agreement ID: 305690

Status

Closed project

  • Start date

    1 January 2013

  • End date

    31 December 2016

Funded under:

FP7-HEALTH

  • Overall budget:

    € 2 293 654,86

  • EU contribution

    € 2 000 000

Coordinated by:

ISTITUTO SUPERIORE DI SANITA

Italy