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Platform for sharing best practices for management of rare diseases

Objectif

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.

Appel à propositions

FP7-HEALTH-2012-INNOVATION-1
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Coordinateur

ISTITUTO SUPERIORE DI SANITA
Adresse
Viale Regina Elena 299
00161 Roma
Italie

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Type d’activité
Research Organisations
Contact administratif
Rosa Maria Martoccia (Dr.)
Contribution de l’UE
€ 653 477,21

Participants (16)

FUNDACION CANARIA DE INVESTIGACION Y SALUD

Participation terminée

Espagne
Adresse
Barranco De La Ballena S/n
35010 Las Palmas De Gran Canaria

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Type d’activité
Other
Contact administratif
Yeray Suarez (Mr.)
JAMARAU
United Kingdom
Contribution de l’UE
€ 210 000
Adresse
Vanbrugh Park Road West 4b
SE3 7QD London

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Type d’activité
Private for-profit entities (excluding Higher or Secondary Education Establishments)
Contact administratif
Joanne Auld (Ms.)
KAROLINSKA INSTITUTET
Suède
Contribution de l’UE
€ 63 800
Adresse
Nobels Vag 5
17177 Stockholm

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Type d’activité
Higher or Secondary Education Establishments
Contact administratif
Miles Davies (Dr.)
HEALTHCARE IMPROVEMENT SCOTLAND
United Kingdom
Contribution de l’UE
€ 120 634,43
Adresse
South Gyle Crescent 1
EH12 9EB Edinburgh

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Type d’activité
Public bodies (excluding Research Organisations and Secondary or Higher Education Establishments)
Contact administratif
Karen Ritchie (Dr.)
LONDON SCHOOL OF ECONOMICS AND POLITICAL SCIENCE
United Kingdom
Contribution de l’UE
€ 121 304,36
Adresse
Houghton Street 1
WC2A 2AE London

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Type d’activité
Higher or Secondary Education Establishments
Contact administratif
Dorota Rejman (Ms.)
CONSIGLIO NAZIONALE DELLE RICERCHE
Italie
Contribution de l’UE
€ 95 000
Adresse
Piazzale Aldo Moro 7
00185 Roma

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Type d’activité
Research Organisations
Contact administratif
Patrizia Re (Dr.)
EURORDIS - EUROPEAN ORGANISATION FOR RARE DISEASES ASSOCIATION
France
Contribution de l’UE
€ 168 000
Adresse
Rue Didot 96
75014 Paris

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Type d’activité
Other
Contact administratif
Patrice Regnier (Mr.)
Associazione per la Ricerca sulla Efficacia della Assistenza Sanitaria Centro Cochrane Italiano
Italie
Contribution de l’UE
€ 100 000
Adresse
Via Fra Cristoforo 14/d
20142 Milano

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Type d’activité
Research Organisations
Contact administratif
Riccardo Sclavi (Dr.)
UNIVERSITAETSKLINIKUM FREIBURG
Allemagne
Contribution de l’UE
€ 176 200
Adresse
Hugstetter Strasse 49
79106 Freiburg

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Type d’activité
Higher or Secondary Education Establishments
Contact administratif
Jürgen Dreyer (Mr.)
BULGARIAN ASSOCIATION FOR PROMOTION OF EDUCATION AND SCIENCE
Bulgarie
Contribution de l’UE
€ 60 584
Adresse
Bratya Sveshtarovi Str 4
4017 Plovdiv

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Type d’activité
Other
Contact administratif
Georgi Iskrov (Mr.)
SERVICIO CANARIO DE LA SALUD
Espagne
Contribution de l’UE
€ 61 000
Adresse
Pérez De Rozas, 5, 4 Planta
38006 Santa Cruz De Tenerife

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Type d’activité
Research Organisations
Contact administratif
Roberto Moreno Díaz (Dr.)
UNIVERSITEIT MAASTRICHT
Pays-Bas
Contribution de l’UE
€ 40 000
Adresse
Minderbroedersberg 4
6200 MD Maastricht

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Type d’activité
Higher or Secondary Education Establishments
Contact administratif
Judith Doomen - Dormans (Mrs.)
UNIVERSITY OF NEWCASTLE UPON TYNE
United Kingdom
Contribution de l’UE
€ 40 000
Adresse
Kings Gate
NE1 7RU Newcastle Upon Tyne

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Type d’activité
Higher or Secondary Education Establishments
Contact administratif
Blinova Aleona (Ms.)
EUROPEAN ACADEMY OF PAEDIATRICS
Belgique
Contribution de l’UE
€ 30 000
Adresse
Avenue De La Couronne 20
1050 Bruxelles

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Type d’activité
Other
Contact administratif
Ingrid Maervoet (Ms.)
INSTITUTO DE SALUD CARLOS III
Espagne
Contribution de l’UE
€ 60 000
Adresse
Monforte De Lemos 5
28029 Madrid

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Type d’activité
Research Organisations
Contact administratif
Miguel ángel Cabo López (Mr.)
FUNDACION CANARIA INSTITUTO DE INVESTIGACION SANITARIA DE CANARIAS

Participation terminée

Espagne
Adresse
Av Juan Xxiii Num 17 Planta 6
35019 Las Palmas De Gran Canaria

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Type d’activité
Other
Contact administratif
Yeray Suarez (Mr.)