Year: 2013-2016

RARE-Bestpractices (www.rarebestpractices.eu/) will develop a networking platform to support the collection of standardized and validated data and an efficient exchange of knowledge and reliable information on rare diseases (RMs).

Rare diseases are characterized by a low prevalence (2 cases per 10.000 inhabitants according to the European definition). There are more than 5.000 rare diseases which, in total, affect 30 million citizens of all ages in Europe. The rare diseases are often characterized by a threat to the life of the affected individual and by chronically debilitating conditions and by the limited possibilities of cure due to lack of knowledge.
Collaborative efforts are needed to address rare diseases in order to prevent morbidity, perinatal or in any case early mortality, to reduce the socio-economic burden and improve the quality of life.
RARE-Bestpracices aims to improve the clinical management of patients with rare diseases, to reduce the existing gaps between member states (MS) and other countries, also in consideration of the application of citizens' rights to cross-border care in application of the EU directive 2011 / 24.
The platform considers rare diseases as a global health issue, exploiting and integrating contributions from all member states and other parts of the world (Caucasus Zone, America, Oceania) and will identify further research questions to improve clinical practice.
By fostering collaboration between experts, patient representatives, policy makers, institutions, agencies and other organizations with experience in systematic reviews and guideline production, RARE-Bestpractices focuses on:

1) Collection, evaluation and dissemination of existing guidelines;
2) Development of a shared methodology suitable for developing and updating guidelines;
3) Prepare modules for the training of key stakeholders to spread the knowledge acquired;
4) Establish a forum for the exchange of information and facilitate exchanges.

Istituto Superiore di Sanità (ISS) - National Center for Rare Diseases, Jamarau, Karolinska Institutet (KI), Healthcare Improvement Scotland (HIS-UK), London School of Economics and Political Science (LSE), National Council of Research (CNR) - Population and Social Policy Research Institute & Clinical Physiology Institute, European Organization for Rare Diseases (EURORDIS), Italian Cochrane Center and Network (AREAS-CCI), Universitaetsklinikum Freiburg (UKLFR), Bulgarian Association for Promotion of Education and Science ( BAPES), Fundación Canaria de Investigación y Salud (FUNCIS), Universiteit Maastricht (UM), Newcastle University (UNEW), European Academy of Paediatrics - Union Of European Medical Specialists - Section of Paediatrics (EAP / UEMS-SP), Istituto de Salud Carlos III (ISCIII),