Newsletter from the ERN Multisystemic Vascular Diseases

VASCern

European Network on Rare Multisystemic Vascular Diseases

Newsletter #6 - November 2016

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image VASCern Technical Assessment results

Following the ERN Technical Assessment (eligibility checks, documentation review, and on-site audit) ongoing since the proposal submission in June, VASCern, the HCP Coordinating Center (Hospital Bichat, CRMR Marfan) and its…

image ERNs & the EU Maltese Presidency

For the first time since its accession in 2004, Malta will hold the Presidency of the Council of the European Union from January to June 2017. Health priorities include Childhood Obesity, HIV,…

image NGO Committee for Rare Diseases (UN)

The NGO Committee for Rare Diseases, a UN Consultative Committee representing Civil Society has been inaugurated at the "Global Gathering for Rare Diseases" on November, 11th 2016 at th United…

image COST Actions

The 25 selected projects of the COST call for proposals 2016 have been published here (starting by CA16). It includes for instance a European network for translational research in children's and adult interstitial…

image H2020 Marie Skłodowska-Curie Actions

EU Factsheet on the Marie Skłodowska-Curie Actions supporting researchers work and training. Since 1996, 98 000 researchers have benefited from the programme.

image EU Joint Action on Rare Cancers (JARC) & ERNs

The EU Joint Action on Rare Cancers kick-off meeting was held on November, 7th. The European Commissionner for Health, Vytenis Andriukaitis mentionned European Reference Networks in his speech, as the JARC will…

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The Hidden Costs of Rare Diseases, a feasibility study

Genetik Alliance UK has conducted a study on the hidden costs of Rare Diseases, assessing how best to measure and evaluate the true costs of managing rare conditions. More info here…

Health at a Glance: Europe 2016

Developped by the OECD in cooperation with the European Commission, this publication provides updated analysis of the health status of EU citizens and the performance of health systems. Read the "Health…

International joint recommendations to address specific needs of undiagnosed Rare Disease patients

International joint recommendations to address specific needs of undiagnosed rare disease patients : here

ECRD Report

Report of the European Conference on Rare Diseases & Orphan Products abstracts:  here

   

Up-coming events


EU calls

  • Mon
    05
    Dec
    2016
    Wed
    01
    Feb
    2017

    The aim of the call is to enable scientists in different countries to build an effective collaboration on a common interdisciplinary research project based on complementarities and sharing of expertise, with a clear translational research approach. Projects shall involve a group of rare diseases or a single rare disease following the European definition i.e. a disease affecting not more than five in 10.000 persons in the European Community, EC associated states and Canada.

    The specific objective of this call is to promote research projects focusing on the pre-clinical development of therapeutic approaches in suitable existing animal or cell models.

    Deadline for proposal pre-registration: February 1, 2017

    Deadline for proposal submission: June 2nd, 2017

    More information here

  • Wed
    07
    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 set for December 7, 2016. 

    There will be a next collection date in September 2017.

    All information on COST Action here

    Call documents and guidelines to submit a proposal here

  • Tue
    10
    Jan
    2017

    All information on the calls for Innovative Training Networks available here

    Deadline: January 10th 2017

  • Sun
    15
    Jan
    2017

    The objective of the consultation is to collect information from a wide audience on different aspects of Horizon 2020 implementation. The results of this consultation will feed into the report on the interim evaluation of Horizon 2020, will help the European Commission to improve the implementation of Horizon 2020 and will set the scene for the future discussions on the next EU research and innovation funding post-2020.

    Answer to the consultation here 

    Deadline: January 15th 2017

  • Tue
    31
    Jan
    2017

    The European Commission (DG Health) has launched a new call for proposals for a pilot project in the area of Rare Diseases. This will be founded by the European 3rd Health Programme.

    PP-2-1-2016 - Pilot project — Establishing a Registry of Rare Congenital Malformations (as part of the Rare Diseases Registry), drawing on the structure, organization and experience of the Registry of Congenital Malformations

    Opening: October 27th 2016
    Deadline: January 31st 2017
    Call document: here 
    More information and link for submission here

     

  • Thu
    09
    Feb
    2017

    Call identifier: ERC-2017-CoG

    Deadline: February, 9th 2017

    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)

  • Thu
    23
    Feb
    2017

    Being nearly at the half-way point of the 3rd Health Programme which runs from 2014 to 2020, the Commission would like to evaluate whether it is meeting its objectives and whether there is room for improvement.

    Answer here to the EU Consultation on the 3rd European Health Programme ! It is open to any interested parties in order to gather views and opinions on:

    • The objectives and priorities of the 3HP, and the extent to which these are appropriate and in line with health needs in the EU
    • The way the 3HP is implemented, and the extent to which this is effective and efficient
    • The overall added value and usefulness of the 3HP

    More info here

  • Fri
    31
    Mar
    2017

    If you follow a cohort of patients with FMD, and are willing to contribute to the European FMD registry and join a network of specialists interested by the clinical and basic aspects of the disease, please contact us (FMD-saintluc@uclouvain.be).

    Read the call here

  • Tue
    11
    Apr
    2017

    Topic Identification:  SC1-HCO-07-2017

    Stay tuned: here

  • Tue
    11
    Apr
    2017

    Topic identifier: SC1-HCO-03-2017
    Types of action: ERA-NET-Cofund ERA-NET Cofund

    More information here

  • Tue
    11
    Apr
    2017

    Topic identifier: SC1-PM-03-2017
    Types of action: RIA Research and Innovation action

    Deadline: 11 April 2017

    The aim of this research should be to apply genomics and/or other –omics and/or other high-throughput approaches for the molecular characterisation of rare diseases in view of developing molecular diagnoses for a large number of undiagnosed rare diseases. 

    More information here

  • Tue
    11
    Apr
    2017

    Topic identifier: SC1-HCO-08-2017
    Types of action: CSA Coordination and support action

    More information and call documents here

  • Tue
    11
    Apr
    2017

    Topic identifier: SC1-PM-08-2017
    Types of action: RIA Research and Innovation action

    Deadline: April 11th 2017

    Support will be provided to clinical trials on substances where orphan designation has been given by the European Commission, where the proposed clinical trial design takes into account recommendations from protocol assistance given by the European Medicines Agency, and where a clear patient recruitment strategy is presented. 

    More information and call documents here

  • Tue
    11
    Apr
    2017

    Topic identifier: SC1-PM-02-2017
    Types of action: RIA Research and Innovation action

    Deadline: April 11th 2017

    More information and call documents: here

  • Tue
    11
    Apr
    2017

    Topic identifier: SC1-PM-10-2017
    Types of action: RIA Research and Innovation action

    Deadline: April 11th 2017

    More information and call documents here

  • Tue
    11
    Apr
    2017

    Topic identifier: SC1-PM-20-2017
    Types of action: RIA Research and Innovation action

    Deadline: April 11th 2017

    More information and call documents 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)

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