Newsletter from the ERN Multisystemic Vascular Diseases

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European Network on Rare Multisystemic Vascular Diseases

Newsletter #2 - June 2016

Dear all, 

We are glad to send you our VASCern Newsletter #2, and wish you a pleasant reading. We invite you to regularly visit our website, where you can read all news and events and find updated information about the VASCern project. 

image Personalised Medicine

The Personalised Medicine Conference's presentations and videos are available here, including sessions about: Developing awareness and empowerment, Integrating Big Data and ICT Solutions,  Translating Basic to Clinical Research and Beyond, Bringing Innovation…

image eHealth week

The European "eHealth week", co-organised by the European Commission took place in Amsterdam, between June, 8-10th. All news and updates are available here

image ECRD Reports

The European Conference on Rare Diseases & Orphan Products (Edimbourg, 27-29th May 2016) presentations and videos are available here

image State of Health of the EU

The European Commissioner for Health and Food Safety, Vytenis Andriukaitis, has announced on Friday 17th his new initiative "state of health of the EU" gathers experts together in order to stengthen…

image ERN IT Platform Tender

The Tender for the ERN IT Platform, "a Scalable software as a service (SaaS) for a clinical patient management system to support European reference networks" - was launched on Friday, 17th.…

image ERN proposal submitted!

Our European Reference Network project proposal on Rare Multistemic Vascular Diseases (VASCern) has been submitted on June, 21st, together with the 31 Healthcare Providers (HCPs) Membership Applications to answer the…

image ERN call

The ERN 2016 call deadline is approaching (June, 21st) ! Most of our HCPs Members Applicants have finalised their application and got their letters of national endorsement from their governments, the…

image eHealth: connecting health systems in Europe

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…

image What is Pediatric Primary Lymphedema?

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…

image ERN Affiliated Partners: rules

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…

Up-coming events

  • Thu
    Berlin, Germany
    • Connecting and exchanging each in the worlds fastest growing business
    • Hear and learn best practises how to implement innovation in corporate culture
    • Solving healthcare challenges together
    • Accelerating transforming healthcare in digital times
    • Validate the economics of digital health and how consumer are likely to react to inception
    • Identify business opportunities within emerging markets healthcare system

    All information here

  • Fri

    The InfoDay on H2020 Program for Health, Demographic Change and Wellbeing, will help interested stakeholders to find out information about the upcoming calls, development of a H2020 project proposal, partnerships, etc.

    More info here

  • Tue

    The EURATOM Programme  aims to pursue nuclear research and training activities with an emphasis on continually improving nuclear safety and security, but there is also space for health-related projects under the fields of nuclear medicine, radiation protection and development of medical applications of radiation, including, inter alia, the secure and safe supply and use of radioisotopes.

    All information and registration here

  • Thu
    Washington Capital Hilton in Washington, DC

    The 4th, and final, GenTAC Thoracic Aortic Disease Summit will be held September 22-23, 2016 at the Washington Capital Hilton in Washington, DC. The previous 3 Thoracic Aortic Disease Summits brought together prominent clinical, translational and basic scientists who presented research on disease etiology, pathogenesis, progression and treatment. This meeting will be held to continue sharing new findings from GenTAC and the research community, to discuss the current advances regarding disease pathogenesis, progression, and treatment and to identify future directions for the field.

    More information here

  • Mon
    National Centre for Rare Diseases, Rome

    The two events intend to promote the establishment of Findable, Accessible, Interoperable and Reusable (FAIR) Rare Disease (RD) registries in compliance with the IRDiRC and EU Recommendations and to support cooperation among different registry stakeholders and coordination with registries that are developed within National Plans in the EU in the field of rare diseases.


    All information available:  here

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