Skip to main content

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.

Call for proposal

FP7-HEALTH-2012-INNOVATION-1
See other projects for this call

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)

FUNDACION CANARIA DE INVESTIGACION Y SALUD

Participation ended

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

Participation ended

Spain
Address
Av Juan Xxiii Num 17 Planta 6
35004 Las Palmas De Gran Canaria
Activity type
Other
Administrative Contact
Yeray Suarez (Mr.)