Project manager: Dr.ssa Domenica Taruscio (Istituto Superiore di Sanità)
RARE-Bestpractices (www.rarebestpractices.eu/) 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 Member States (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, America, Oceania) and will identify additional research needs to further improve clinical practice.
Fostering synergistic collaboration among experts, patient representatives, policymakers, institutions, agencies, and other organizations experienced in systematic reviews and guidelines production, RARE-Bestpractices will focus on:
- collection, evaluation and dissemination of existing best practice guidelines;
- an agreed methodology suitable to develop and update best practice guidelines;
- training activities targeted at key stakeholders to spread expertise and knowledge; and
- 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.
1 -Istituto Superiore di Sanità (ISS) – National Centre for Rare Diseases;
3 -Karolinska Institutet (KI);
4 -Healthcare Improvement Scotland (HIS-UK);
5 -London School of Economics and Political Science (LSE);
6 -National Council of Research (CNR) – Istituto di Ricerche sulla Popolazione e le Politiche Sociale & Istituto di Fisiologia Clinica;
7 -European Organisation for Rare Diseases (EURORDIS);
8 -Italian Cochrane Center and Network (AREAS-CCI);
9 -Universitaetsklinikum Freiburg (UKLFR);
10 -Bulgarian Association for Promotion of Education and Science (BAPES);
11 -Fundación Canaria de Investigación y Salud (FUNCIS);
12 -Universiteit Maastricht (UM);
13 -Newcastle University (UNEW);
14 -European Academy of Paediatrics – Union Of European Medical Specialists – Section of Paediatrics (EAP/UEMS-SP);
15 -Istituto de Salud Carlos III (ISCIII);
Pierpaolo Mincarone, Fabio Palazzo