EUROPEAN REFERENCE NETWORKS
One of the most interesting healthcare projects going on in Europe is about European Reference Networks for rare diseases (ERN's). If at least 10 hospitals from at least 8 different countries decide to join forces they can establish a ERN for a particular group of rare diseases.
RARE AUTOIMMUNE AND AUTO-INFLAMMATORY DISEASES
Since there are between 6000 and 8000 rare diseases, a certain way of grouping was needed. Therefore 21 groups have been created. Vasculitis is a systemic disease so there has been a bit of discussion on which group is best suited to host vasculitis. There seem to be consensus now that this is the group called: Rare Autoimmune and Autoinflammatory Diseases.
EPAGs
One of the requirements to apply for an ERN is that the ERN should be 'patient centered'. So hospitals have to prove that they involve patient organizations in the process of establishing and running them. For that purpose EURORDIS also created so called European Patient Advocacy Groups (e-PAGs) to work with and alongside the ERNs. Both the UK and NL organisations are therefore working closely together with several European academic hospitals to make all this happen. We will keep you posted...
One of the most interesting healthcare projects going on in Europe is about European Reference Networks for rare diseases (ERN's). If at least 10 hospitals from at least 8 different countries decide to join forces they can establish a ERN for a particular group of rare diseases.
RARE AUTOIMMUNE AND AUTO-INFLAMMATORY DISEASES
Since there are between 6000 and 8000 rare diseases, a certain way of grouping was needed. Therefore 21 groups have been created. Vasculitis is a systemic disease so there has been a bit of discussion on which group is best suited to host vasculitis. There seem to be consensus now that this is the group called: Rare Autoimmune and Autoinflammatory Diseases.
EPAGs
One of the requirements to apply for an ERN is that the ERN should be 'patient centered'. So hospitals have to prove that they involve patient organizations in the process of establishing and running them. For that purpose EURORDIS also created so called European Patient Advocacy Groups (e-PAGs) to work with and alongside the ERNs. Both the UK and NL organisations are therefore working closely together with several European academic hospitals to make all this happen. We will keep you posted...
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