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Platform for sharing best practices for management of rare diseases

Obiettivo

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.

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FP7-HEALTH-2012-INNOVATION-1
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Coordinatore

ISTITUTO SUPERIORE DI SANITA
Indirizzo
Viale Regina Elena 299
00161 Roma
Italia
Tipo di attività
Research Organisations
Contributo UE
€ 653 477,21
Contatto amministrativo
Rosa Maria Martoccia (Dr.)

Partecipanti (16)

FUNDACION CANARIA DE INVESTIGACION Y SALUD

Partecipazione conclusa

Spagna
Indirizzo
Barranco De La Ballena S/n
35010 Las Palmas De Gran Canaria
Tipo di attività
Other
Contatto amministrativo
Yeray Suarez (Mr.)
JAMARAU
United Kingdom
Contributo UE
€ 210 000
Indirizzo
Vanbrugh Park Road West 4B
SE3 7QD London
Tipo di attività
Private for-profit entities (excluding Higher or Secondary Education Establishments)
Contatto amministrativo
Joanne Auld (Ms.)
KAROLINSKA INSTITUTET
Svezia
Contributo UE
€ 63 800
Indirizzo
Nobels Vag 5
17177 Stockholm
Tipo di attività
Higher or Secondary Education Establishments
Contatto amministrativo
Miles Davies (Dr.)
HEALTHCARE IMPROVEMENT SCOTLAND
United Kingdom
Contributo UE
€ 120 634,43
Indirizzo
South Gyle Crescent 1
EH12 9EB Edinburgh
Tipo di attività
Public bodies (excluding Research Organisations and Secondary or Higher Education Establishments)
Contatto amministrativo
Karen Ritchie (Dr.)
LONDON SCHOOL OF ECONOMICS AND POLITICAL SCIENCE
United Kingdom
Contributo UE
€ 121 304,36
Indirizzo
Houghton Street 1
WC2A 2AE London
Tipo di attività
Higher or Secondary Education Establishments
Contatto amministrativo
Dorota Rejman (Ms.)
CONSIGLIO NAZIONALE DELLE RICERCHE
Italia
Contributo UE
€ 95 000
Indirizzo
Piazzale Aldo Moro 7
00185 Roma
Tipo di attività
Research Organisations
Contatto amministrativo
Patrizia Re (Dr.)
EURORDIS - EUROPEAN ORGANISATION FOR RARE DISEASES ASSOCIATION
Francia
Contributo UE
€ 168 000
Indirizzo
Rue Didot 96
75014 Paris
Tipo di attività
Other
Contatto amministrativo
Patrice Regnier (Mr.)
Associazione per la Ricerca sulla Efficacia della Assistenza Sanitaria Centro Cochrane Italiano
Italia
Contributo UE
€ 100 000
Indirizzo
Via Fra Cristoforo 14/D
20142 Milano
Tipo di attività
Research Organisations
Contatto amministrativo
Riccardo Sclavi (Dr.)
UNIVERSITAETSKLINIKUM FREIBURG
Germania
Contributo UE
€ 176 200
Indirizzo
Hugstetter Strasse 49
79106 Freiburg
Tipo di attività
Higher or Secondary Education Establishments
Contatto amministrativo
Jürgen Dreyer (Mr.)
BULGARIAN ASSOCIATION FOR PROMOTION OF EDUCATION AND SCIENCE
Bulgaria
Contributo UE
€ 60 584
Indirizzo
Bratya Sveshtarovi Str 4
4017 Plovdiv
Tipo di attività
Other
Contatto amministrativo
Georgi Iskrov (Mr.)
SERVICIO CANARIO DE LA SALUD
Spagna
Contributo UE
€ 61 000
Indirizzo
Pérez De Rozas, 5, 4 Planta
38006 Santa Cruz De Tenerife
Tipo di attività
Research Organisations
Contatto amministrativo
Roberto Moreno Díaz (Dr.)
UNIVERSITEIT MAASTRICHT
Paesi Bassi
Contributo UE
€ 40 000
Indirizzo
Minderbroedersberg 4
6200 MD Maastricht
Tipo di attività
Higher or Secondary Education Establishments
Contatto amministrativo
Judith Doomen - Dormans (Mrs.)
UNIVERSITY OF NEWCASTLE UPON TYNE
United Kingdom
Contributo UE
€ 40 000
Indirizzo
Kings Gate
NE1 7RU Newcastle Upon Tyne
Tipo di attività
Higher or Secondary Education Establishments
Contatto amministrativo
Blinova Aleona (Ms.)
EUROPEAN ACADEMY OF PAEDIATRICS
Belgio
Contributo UE
€ 30 000
Indirizzo
Avenue De La Couronne 20
1050 Bruxelles
Tipo di attività
Other
Contatto amministrativo
Ingrid Maervoet (Ms.)
INSTITUTO DE SALUD CARLOS III
Spagna
Contributo UE
€ 60 000
Indirizzo
Monforte De Lemos 5
28029 Madrid
Tipo di attività
Research Organisations
Contatto amministrativo
Miguel ángel Cabo López (Mr.)
FUNDACION CANARIA DE INVESTIGACIONSANITARIA (FUNCANIS)

Partecipazione conclusa

Spagna
Indirizzo
Av Juan Xxiii Num 17 Planta 6
35004 Las Palmas De Gran Canaria
Tipo di attività
Other
Contatto amministrativo
Yeray Suarez (Mr.)