Ik ben deze ataxie-adca-sca blog begonnen om geïnteresseerden op de hoogte te houden van wat de nieuwe ontwikkelingen zijn op het gebied van onderzoek naar ataxie. Ook zal ik verslag doen van activiteiten die plaatsvinden om een zeldzame ziekte onder de aandacht te brengen bij de regering maar ook in het Europese Parlement.
European Reference Networks approved by the Board of Member States of the European Council
January 12, 2017
By Prof. Antonio Federico, Chairman EAN Scientific Committee, Chairman EAN Task Force on Rare Neurologic Diseases
On the 15th December 2016 the European Reference Network Board of Member States approved several European Reference Networks (ERNs). This is an important news, since ERNs are networks for clinicians and researchers to share expertise, knowledge and resources across the EU, created as a legal entity by the European Union.
What are the ERNs?
ERNs are networks for clinicians and researchers to share expertise, knowledge and resources across the EU, created as a legal entity by the European Union. They will provide for the first time a unique opportunity for clinicians to work cross border in Europe in healthcare in order to tackle this challenge. European Reference Networks (ERNs) create a clear governance structure for knowledge sharing and care coordination across the EU to improve access to diagnosis and treatment, as well as the provision of high-quality healthcare for patients. They are networks of centers of expertise and healthcare providers that are organized across borders. Due to the low prevalence and complexity of rare diseases, as well as to the nature of small and scattered patient populations, the system of ERNs that is being established can bring real added value to rare disease patients. By ensuring doctors to have the most recent and expert knowledge possible, they will be better informed to make decisions on how to adapt treatment and care pathways. This in turn contributes to improvements in clinical outcomes and the quality of life of people living with a rare disease."ERN will facilitate the sharing of knowledge, experience, medical research, teaching, training and resources. They use relevant communication and eHealth tools to enable the mobility of expertise across borders, rather than the movement of patients that travel to access care and expertise that does not exist in their country."