Rare diseases (RD) are defned in the European Union as life-threatening and/or chronically debilitating conditions that affect less than 5 per 10,000 people. Terefore, these small numbers of patients and their geographic dispersion are an obstacle to the diagnosis, access to care, research and improvement of medical expertise. European Reference Networks (ERNs) for rare diseases have been advocate for years to overcome these obstacles, by linking research and knowledge centres, updating and contributing to the latest scientifc fndings and ensuring the availability of subsequent treatment facilities where necessary. Te main goal is to assure the equity in access to prevention, diagnosis and care for patients with a RD throughout the European Union. By 2011 the European Directive on the application of patient's rights in cross-border healthcare was adopted and established a legal framework for cross-border healthcare within the European Union (EU). One of the aims of the directive is to promote cooperation between the health systems of Member States including the establishment of European Reference Networks (ERNs). ERNs are an excellent model to overcome some of the specifc problems of rare diseases: scarcity of patients, resources and expertise.
The European Reference Network in the feld of the Vascular Rare Diseases
Tognola G;Paglialonga A;
2016
Abstract
Rare diseases (RD) are defned in the European Union as life-threatening and/or chronically debilitating conditions that affect less than 5 per 10,000 people. Terefore, these small numbers of patients and their geographic dispersion are an obstacle to the diagnosis, access to care, research and improvement of medical expertise. European Reference Networks (ERNs) for rare diseases have been advocate for years to overcome these obstacles, by linking research and knowledge centres, updating and contributing to the latest scientifc fndings and ensuring the availability of subsequent treatment facilities where necessary. Te main goal is to assure the equity in access to prevention, diagnosis and care for patients with a RD throughout the European Union. By 2011 the European Directive on the application of patient's rights in cross-border healthcare was adopted and established a legal framework for cross-border healthcare within the European Union (EU). One of the aims of the directive is to promote cooperation between the health systems of Member States including the establishment of European Reference Networks (ERNs). ERNs are an excellent model to overcome some of the specifc problems of rare diseases: scarcity of patients, resources and expertise.I documenti in IRIS sono protetti da copyright e tutti i diritti sono riservati, salvo diversa indicazione.