Cel
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.
Dziedzina nauki
Zaproszenie do składania wniosków
FP7-HEALTH-2012-INNOVATION-1
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System finansowania
CSA-CA - Coordination (or networking) actionsKoordynator
00161 Roma
Włochy
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Uczestnicy (16)
Zakończenie uczestnictwa
35010 LAS PALMAS DE GRAN CANARIA
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SE3 7QD LONDON
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17177 Stockholm
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EH12 9EB EDINBURGH
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WC2A 2AE London
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00185 Roma
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75014 Paris
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20142 Milano
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79106 Freiburg
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4017 Plovdiv
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38006 Santa Cruz De Tenerife
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6200 MD Maastricht
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NE1 7RU Newcastle Upon Tyne
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1050 Bruxelles / Brussel
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28029 Madrid
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Zakończenie uczestnictwa
35019 Las Palmas De Gran Canaria
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