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    The first European Reference Networks (ERNs) on Rare Diseases will be launched by the end of 2016. Accordingly, the European Commission has launched the first ERN Call for interest on March, 16th 2016. Among 21 Thematic Groups of Rare Diseases, which were mentioned by the European Commission Expert Group on Rare Diseases, the ERN on Rare Multi-Systemic Vascular Diseases is to be set-up.

    ERNs aim to facilitate and improve access to diagnosis and treatment in rare or low prevalence complex diseases or conditions by pooling existing highly specialised healthcare providers across the EU, who will share knowledge, experience, medical research, teaching, training, resources and use relevant communication tools to make expertise travel rather than the patients. This will also reduce inequalities of treatment within the European Union.

     

    Find out all information about the ERN Project here

    The European Reference Network on Rare Multisystemic Vascular Diseases gathers about 40 multidisciplinary European highly specialized healthcare providers (HCPs) in this thematic field, represented by clinicians and researchers, and includes specific Diseases Working Groups: Aorta, Medium size arteries, HHT, vascular anomalies and primary lymphoedemas, as well as several Thematic Working Groups.

    All Members are Centers of Reference/ Excellence recognized in their countries. These Healthcare Providers have developed extensive European collaborations through their specific Rare Diseases’ networks. They join this ERN to foster and reinforce European cooperation in Rare Multisystemic Vascular Diseases, following a common and multidisciplinary approach to patient care, in order to overcome the challenges of rarity. They are committed to improve diagnosis, treatment, and care for patients by using all opportunities and activities offered by the ERN Project.

     

    Find out all information about Our Network here

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    Our ERN aims to facilitate and improve diagnosis, treatment and care for patients suffering from Rare Multisystemic Vascular Diseases or low prevalence conditions, thus enhancing quality of life of these patients, by networking, sharing and spreading our expertise, promoting best practices, developing a common action plan, guidelines and clinical outcomes and through patient-empowerment.

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