Newsletter from the ERN Multisystemic Vascular Diseases

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VASCern

European Network on Rare Multisystemic Vascular Diseases

Newsletter #4 - September 2016

image IRDiIC Report on Small Population Clinical Trials

This report (July 2016) tackles the challenges of conducting clinical trials in Rare Diseases.  

image Join VASCern Patient Advocacy Group!

Eurordis has published a call for patient representatives to join the European Patient Advocacy Group. There are EPAG for each ERN project proposal / thematic area of expertise. Patient representatives from…

image ERNs Updates

The European Commission has published updated news on the ERN Call 2016 and ERN Assessment process. The European Commission has received 24 ERN applications; involving a total of 370 hospitals and…

image Report on Healthcare requiring highly specialised and costintensive medical infrastructure or medical equipment

This study is a benchmark for a valid and transparent assessment of the degree of specialisation and costliness of medical equipment or infrastructure, based firstly on literature review and then…

image EU Report on Pharmacovigilance

Commission publishes report on activities to monitor medicine safety in EU. More information here

image ERN Assessment Timeline

The VASCern Project proposal including 31 Healthcare Providers Membership applications as well as the network application succeeded the first European Commission eligibility check. This was a first step of the ERN…

image HHT Member new publication

A new collaborative research publication has been published in the JAMA by Dr. Sophie Dupuis-Girod, Co-chair of the VASCern HHT-WG and HCP Representative of the French HHT Reference Center, Hospices…

image VASCern Presentation

An updated presentation of VASCern Members, Governance, Structure and Working Groups is available here

image Board of Member States MoM

The European Commission has just published the Board of Member States Minutes of Meeting, which was held on March. Issues such as the importance of avoiding fragmentation, relations between ERNs…

image Rare Diseases & ERNs in H2020 2018-2020

The Advisory Expert Group to the European Commission (DG Research and Innovation) on H2020, Societal Challenge 1 "Health, Demographic Change and Well-being" has released its report on the Horizon 2020…


Up-coming events

  • Mon
    10
    Oct
    2016
  • Tue
    11
    Oct
    2016
    Wed
    12
    Oct
    2016
    Paris, France

    MAIN OBJECTIVES

    • To provide an overview of the latest scientific developments and challenges related to the use of ICT in medical research
    • To reflect on the regulatory, sociological, ethical, logistical and methodological framework for using ICT in medical research
    • To assess the state-of-the-art on the subject at an international level
    • To present, during innovation sessions, the products or solutions under development that could be applied in medical research
    • To promote partnerships between academic researchers and R&D scientists from the e-health industry
    • To increase public-private networking to develop long-term collaborations around ICT
    • To create the conditions for the collaborative development of tomorrow’s medical research

    All information and registration here

  • Fri
    14
    Oct
    2016
    Brașov, Romania

    This initiative consists of a series of half-day events where national research communities are informed by representatives of the COST Association about the COST Framework’s policies, activities and funding opportunities, with an emphasis on the Open Call for new COST Actions proposals.

    Information and registration here

  • Wed
    19
    Oct
    2016
    Thu
    20
    Oct
    2016
    Cap Town, South Africa

    The purpose of this conference is to provide a global forum for all stakeholders within the Rare Diseases field, both locally and abroad, to participate in open discussion, enhance models of best practice and share specialist knowledge around rare diseases and orphan drugs. Incorporating the annual International Conference on Rare Diseases and Orphan Drugs (ICORD) for 2016, RareX has an extended program, to incorporate patients, their families and caregivers as well as support groups and minority groups within the rare disease community.

    All information and registration here

  • Thu
    20
    Oct
    2016
    Paris, France

    The French Rare Diseases Foundation (Fondation Maladies Rares) organises a seminar (in French) on Social and Human Sciences (SHS) projects and Rare Diseases. It includes a session on primary lymphoedema and financial inequalities in access to care.

    Draft programme: here

  • Thu
    20
    Oct
    2016
    Thu
    09
    Feb
    2017

    Call identifier: ERC-2017-CoG

    ERC Consolidator Grants are designed to support excellent Principal Investigators at the career stage at which they may still be consolidating their own independent research team or programme. Applicant Principal Investigators must demonstrate the ground-breaking nature, ambition and feasibility of their scientific proposal. Principal Investigator shall have been awarded his or her first PhD > 7 and ≤ 12 years prior to 1 January 2017. 

    More information in the ERC 2017 Work Programme (pp. 23-24 on CoG)

  • Wed
    26
    Oct
    2016
    Thu
    27
    Oct
    2016
    Chicago, Illinois, US

    ConferenceSeries and its subsidiaries including iMedPub LLC and Conference Series LLC Organise 3000+ Conferences across USA, Europe & Asia with support from 1000 more scientific societies and Publishes 700+ Open Access Journals which contains over 50000 eminent personalities, reputed scientists as editorial board members.

    All information and registration here

  • Fri
    28
    Oct
    2016
    Sun
    30
    Oct
    2016
    Boston, USA

    All information and registration here

  • Sun
    30
    Oct
    2016
    Brussels, Belgium

    Conference on cross-border healthcare Directive “Towards amplified awareness of EU rights to cross-border care” - European Commission

    The conference aims mainly at:

    • Improving information provision to enable patients to cross-border healthcare;
    • Fostering better coordination between NCPs;
    • Amplifying NCP cooperation with patient organisations, healthcare providers and healthcare insurers for the benefit of patients.

    More information here

  • Sun
    30
    Oct
    2016
    Thu
    03
    Nov
    2016
    Boston, US

    All information and registration here

  • Tue
    08
    Nov
    2016
    Tue
    14
    Mar
    2017

    Topic identifier: SC1-PM-19-2017
    Types of action: PPI Public Procurement of Innovative solutions

    Proposals should address as primary aim public procurement of innovative solutions (PPI) to facilitate the deployment of an eHealth infrastructure taking into consideration the European eHealth Interoperability Framework and EU guidelines adopted by the eHealth Network. The PPI(s), and any accompanying innovation activities in particular by participating procurers themselves to facilitate the uptake of newly developed solutions, should focus on clear target outcomes such as allowing the sharing of health information, the use of semantically interoperable Electronic Health Records (EHRs) for safety alerts, decision support, care pathways or care coordination. The scope of the PPI(s) is to specify, purchase and deploy innovative ICT based solutions which can deliver sustainable, new or improved healthcare services across organisational boundaries while implementing eHealth interoperability standards and/or specifications (e.g. EN13606, HL7, Continua Alliance, IHE...).

    The Commission considers that proposals requesting a contribution from the EU of between EUR 3 and 4 million would allow this specific challenge to be addressed appropriately. Nonetheless, this does not preclude submission and selection of proposals requesting other amounts.

    More information and call documents here

  • Tue
    08
    Nov
    2016
    Tue
    14
    Mar
    2017

    Topic identifier: SC1-PM-17-2017
    Types of action: RIA Research and Innovation action

    More information and call documents here

  • Tue
    15
    Nov
    2016
    Thu
    17
    Nov
    2016
    Brussels, Belgium

    All information and registration here

  • Mon
    28
    Nov
    2016
    Thu
    01
    Dec
    2016
    Amsterdam, Netherlands

    Connecting Cell and Gene Therapy Leaders to drive manufacturing and commercialisation through direct access to innovative discovery, product development and regulatory know-how.

    More information and registration here

  • Thu
    01
    Dec
    2016

    COST is the longest-running European framework supporting trans-national cooperation among researchers, engineers and scholars across Europe.

    You can submit your COST Action proposal at any time throughout the year via the new e-COST online submission tool. The next Collection Date is tentatively set for 1 December 2016, at 12:00 CET.

    All information on COST Action here

    Call documents and guidelines to submit a proposal here

  • Thu
    15
    Dec
    2016
    Sat
    17
    Dec
    2016
    Milano, Italy

    The main philosophy of the meeting will be unchanged and our mission will be to offer to the participants an update focused mostly on the practical aspect of vascular surgery through a dynamic format based on rapid paced presentations.

    All information are available here

  • Wed
    08
    Feb
    2017
    Thu
    09
    Feb
    2017
    Paris, France

    The third conference of the International Rare Diseases Research Consortium (IRDiRC) will take place February 8-9, 2017 in Paris, France at the conference center of Université Pierre et Marie Curie (UPMC) Jussieu.

    More information and registration here

  • Sun
    05
    Mar
    2017
    Wed
    08
    Mar
    2017
    Boston, Massachusetts, USA

    All information and registration here

  • Tue
    16
    May
    2017
    Thu
    31
    Aug
    2017

    Call identifier: ERC-2017-AdG

    ERC Advanced Grant Principal Investigators are expected to be active researchers and to have a track record of significant research achievements in the last 10 years which must be presented in the application. There is little prospect of an application succeeding in the absence of such a record, which identifies investigators as exceptional leaders in terms of originality and significance of their research contributions.

    More information in the ERC Work Programme 2017 (pp. 25-28 on AdG)

  • Wed
    30
    May
    2018
    Fri
    01
    Jun
    2018
    Amsterdam

    ISSVA 2018

    This biannual meeting, which is attended by a wide array of specialists including intervention radiologists, dermatologists, plastic surgeons, ENT surgeons, pediatricians, pediatric surgeons, oncologists and pathologists, presents the latest developments in this fast moving area.

    All information and registration on the event page here