The European Commission has published a leaflet on European eHealth policy available here. ERNs will promote innovative clinical solutions (telemedicine), ideas and new possibilities in medical research with potentially far-reaching benefits for patients. More information on our Network plans on eHealth here
The International Lymphedema Framework (ILF) camp for children present two videos: – Highlights of the children camps, which is going to be replicated this year in Italy – Children explaining what it means living with Lymphoedema
The ERN Board of Member States has published an official statement on “Affiliated Partners”. ERNs should plan how they will integrate and cooperate with such Affiliated Partners. These Partners will be HCPs designated by Member States, following application process and the relevant criteria. They will be from Member States with no HCPs already …
EU Reports on quality and safety standards for human blood, tissues and cells as well as on Strategies across Europe to assess quality of care were published. More information and reports here and here
All Aortic Dissection Awarness Day are available for download here Here is a testimory “Living with Aortic Dissection”
EURORDIS Patient Advocacy Groups representatives have been elected. For the ERN Rare Multisystemic Vascular Diseases, several representatives are elected: Luisa Maria Botella (HTT Spain), Paolo Federici (Associazione Fondazione Italiana HHT ‘Onilde Carini’), Rafaella Restaino (Fondazione Alessandra Bisceglia W ALE Onlus), Patrice Touboulie, MARFANS (France), and Christina Grabowski, Morbus Osler Selbsthilfe e.V. (Germany). …
The European Commission has released new versions of the official templates for the ERN Application: HCP and Network application & self assessment forms. These revised forms must replace the former ones for your application. All documents are available here and the European Commission FAQ is updated regularly
Each HealthCare Providers applying to be Member of European Reference Networks should be endorsed nationnally. The HCPs / Centers of Excellence must indeed provide a letter of national endorsement together with its application and self-assessment forms. Some information on Each national processes are provided in the European Commission page on the …
Our Members are regularly brainstorming and liaising to define our Network and conduct the self-assessment process. To stay updated on our ERN project development, visit our Network page !
In order to ensure patients participation and meaningful representation within our ERN, we have launched a call for participation to Patient Organisations. Patients representatives are invited to contact us to become Members of our transversal Patient Working Group.