Abstract
BackgroundIn the past few years there has been a political imperative driving the creation of European Reference Networks as these are considered a promising way to achieve equity in access to the most up to date medical care across Europe. The right to equity in the access to care was established by the directive of the European Parliament and of the Council on the application of patients' rights in cross-border healthcare. The particular situation for Rare Diseases whereby sharing of expertise can be regarded as especially valuable, as well as the work that is already in place in the networking of Rare Diseases experts means that Rare Diseases are considered excellent models for the development of European Reference Networks.DiscussionTo be effective, a Rare Disease network should be based on the common effort of different stakeholders and be built on what is present in the community. European Reference Networks are an excellent model to overcome some of the specificities of rare diseases: scarcity of patients, resources and expertise. European Reference Networks with broad scope will allow the rare disease community the possibility of reaching a larger number of patients and more diversified rare diseases. The practical value of grouping rare diseases in broad networks is well demonstrated in different grouping systems present in Europe (EURORDIS grouping of diseases, “Les filières de santé maladies rares”, Orphanet classification and the UK Research Model).SummaryIn this paper the authors, partners of EUCERD Joint Action, address some of the questions that surround the establishment of European Reference Networks. We will focus on how Rare Diseases could be efficiently grouped in order to constitute European Reference Networks and how they might be structured to allow each and every disease to benefit from networking.
Highlights
In the past few years there has been a political imperative driving the creation of European Reference Networks as these are considered a promising way to achieve equity in access to the most up to date medical care across Europe
The European Union has tried to combat the lack of specific health policies for rare diseases in the different Member States, through the establishment of an overall strategy for Member States to support the equity in Evangelista et al Orphanet Journal of Rare Diseases (2016) 11:17 access to prevention, diagnosis and care for patients with a Rare diseases (RD) throughout the European Union
Independently of the established priority, a RD European Reference Networks (ERNs) to be effective should be based on the common effort of different stakeholders and build on what is already present in the community
Summary
Healthcare networks A significant body of work has been conducted around RD ERNs and the likely benefits have been well documented [1, 5,6,7]. The EURORDIS proposal, presented at the workshop “Rare Disease European Reference Networks (RD ERNs) and the use of structural funds to support activities for RD” held in Rome on the 28-29th October 2014 organises ERNs by clinical area and was based upon research undertaken by EURORDIS collaborators. This was an outline document, kindly made accessible to us by EURORDIS, which drafted groupings to facilitate discussion with the Council of National Alliances, Council of European Federations and EURORDIS members (Table 2). Rare cardiac diseases Developmental anomalies during embryogenesis Inborn errors of metabolism Rare gastroenterological diseases Rare neurological diseases Rare abdominal surgical diseases Rare hepatic diseases Rare respiratory diseases Rare urogenital diseases Rare surgical thoracic diseases Rare skin diseases Rare renal diseases Rare eye diseases Rare endocrine diseases Rare haematological diseases Rare immunological diseases Rare systemic and rheumatologic diseases Rare odontological diseases Rare circulatory system diseases Rare bone diseases Rare otorhinolaryngological diseases Rare infertility disorders Rare tumours Rare infectious diseases Rare intoxications Rare gynaecological and obstetric diseases Rare surgical maxillo-facial diseases Rare allergic disease Teratological disorders Rare cardiac malformations Rare genetic diseases Legend: Each of these headings represents a separate and more exhaustive classification. (http://www.orphadata.org/cgi-bin/inc/product3.inc.php)
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