Newsletter from the ERN Multisystemic Vascular Diseases

View this email online

VASCern

European Network on Rare Multisystemic Vascular Diseases

Newsletter #3 - July 2016

Dear all, 

We are glad to send you our VASCern Newsletter #3, 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. The next newsletter will be sent in September. 

We wish you a nice summer. 

image ESOF 2016

The EuroScience Open Forum 2016 took place in Manchester, UK, between July, 23-27th. The European Commissionner for Research, Science and Innovation, Carlos Moedas delivered a speech on "Europe's voyage towards an…

image ERN Assessment Indicative Timeline

24 ERN Project Proposals, including VASCern, have been submitted to the European Commission, DG Health in June (call with the FPA Funding) and July (without Funding). The Assessment process should…

image Research Integrity in H2020

New provisions in the Horizon 2020 (European Union Programme for Research and Innovation) Model Grant Agreement bring about reinforced rules regarding Research Integrity. Article 34 of the MGA calls for beneficiaries to…

image ERC Work Programme and Record budget 2017

"The European Research Council (ERC) announces its 2017 grant competitions with a total budget of around €1.8 billion, the highest ever since the ERC's inception in 2007. It is also the…

image eHealth Network

The eHealth Network held its 9th meeting in Amsterdam on June, 7th. On the agenda: implementation of the eHealth Digital Service Infrastructure (eHDSI), identification for the exchange of personal health…

image The EU invests in Health

The European Commission has released a factsheet on the European Fund for Strategic Investments (EFSI) role with regard to the Health sector. "EFSI, cornerstone of the Investment Plan, can support investment in…

image Disability and Rare Diseases

ORPHANET and the French National Solidarity Fund for Autonomy (CNSA) have developed a new thesaurus services on ORPHANET on Rare Diseases' Disability. Rare Diseases will be progressively described in this thesaurus…

image Cross-border Healthcare

The European Commission has released new educational material regarding cross-border healthcare (moving within the European Union, rules when living in another EU country etc.).

image Patient Empowerment

The European Patient Forum (EPF) campaign for patient empowerment ended on  June 22nd. The closing ceremony took place at the European Parliament and the EPF delivered some strong political messages.…

image Call for projects on Rare Diseases for Whole Exome Sequencing – BBMRI- LPC

BBMRI- LPC (Biobanking and Biomolecular Resources Research Infrastructure – Large Prospective Cohorts) is one of the largest biobanking networks in Europe aiming to facilitate scientists’ access to large prospective study sets…


Up-coming events

  • Tue
    26
    Jul
    2016
    Tue
    18
    Oct
    2016

    Call identifier: ERC-2017-StG

    ERC Starting Grants are designed to support excellent Principal Investigators at the career stage at which they are starting 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 ≥ 2 and ≤ 7 years prior to 1 January 2017.

    More information in the 2017 ERC Work Programme (see pp. 21-22 for Starting Grants)

     

  • Fri
    29
    Jul
    2016
    Tue
    11
    Apr
    2017

    Topic Identification:  SC1-HCO-07-2017

    Stay tuned: here

  • Fri
    29
    Jul
    2016
    Tue
    11
    Apr
    2017

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

    This call should aim at implementing a key area of the PerMed Strategic Research Agenda and be complementary with other funding programmes and activities at European and international level. Proposers are encouraged to include other joint activities including additional joint calls without EU co-funding. This work should be informed by the output of the coordination and support action envisaged in topic SC1-HCO-05-2016 - Coordinating personalised medicine research, without duplicating any of its work.

    The proposed ERA-NET should demonstrate the expected impact on national and transnational programmes as well as the leverage effect on European research and competitiveness, and should plan the development of key indicators for supporting this. Participation of international partners is highly encouraged.

    The Commission considers that a proposal requesting a contribution from the EU of EUR 5 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 here

  • Fri
    29
    Jul
    2016
    Tue
    11
    Apr
    2017

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

    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. Undiagnosed rare diseases may range from a group of unnamed disorders with common characteristics to a phenotypically well described disease or group of diseases with an unknown molecular basis. Genetic variability due to geographical distribution and/or different ethnicity should be taken into account as well as genotype-phenotype correlation whenever applicable. In addition, age, sex and gender aspects should be included where appropriate. This large-scale proposal should promote common standards and terminologies for rare disease classification and support appropriate bioinformatics tools and incentives to facilitate data sharing. Existing resources should be used for depositing data generated by this proposal. Molecular and/or functional characterisation may be part of the proposal to confirm diagnosis. The proposal should enable and foster scientific exchange between stakeholders from countries and regions with different practices and strategies of rare disease diagnostics.

    The selected proposal shall contribute to the objectives of, and follow the guidelines and policies of the International Rare Diseases Research Consortium IRDiRC (www.irdirc.org).

    The Commission considers that requesting a contribution from the EU of around EUR 15 million would allow this specific challenge to be addressed appropriately. Nonetheless, this does not preclude submission and selection of a proposal requesting other amounts.

    More information here

  • Fri
    29
    Jul
    2016
    Tue
    11
    Apr
    2017

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

    Any type of activities that can help less performing countries and regions to build capacities and exploit opportunities to eventually increase their participation in EU funded collaborative projects can be supported.

    The proposals will propose concrete measures for tackling structural barriers to health research and innovation, including those related to capacity, skills, policy, regulatory environment, and economic and socio-cultural factors including gender equality issues and gender dimension in research content.

    More information and call documents here

  • Fri
    29
    Jul
    2016
    Tue
    11
    Apr
    2017

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

    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. Clinical trials may focus on a range of interventions with an orphan designation, from small molecule to gene or cell therapy, may include novel interventions and/or repurposing of existing and known interventions. The intervention must have been granted the EU orphan designation at the latest on the date of the full proposal call closure. A concise feasibility assessment justified by available published and preliminary preclinical or clinical results and supporting data shall also be provided. Appropriate plans to engage with patient organisations, Member States health authorities and considerations of efficacy/potential clinical benefit as well as early indication on health economics should be integrated in the application. In addition to the clinical trial, proposals may also include limited elements of late stage preclinical research and/or experimental evaluation of potential risks which must be complementary/contribute to the clinical trial(s) carried out within the proposal. The centre of gravity must clearly be the clinical trial(s). The participation of SMEs is encouraged.

    More information and call documents here

  • Fri
    29
    Jul
    2016
    Tue
    11
    Apr
    2017

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

    Proposals should deliver novel concepts for disease-mechanism based patient stratification to address the needs for stratified or personalised therapeutic interventions. The proposals should integrate multidimensional and longitudinal data and harness the power of -omics, including pharmacogenomics, systems biomedicine approaches, network analysis and of computational modelling. The new concepts of stratification should be validated in pre-clinical and clinical studies taking into account sex and gender differences. Applicants are encouraged to actively involve patient associations. The proposals should consider regulatory aspects of clinical practice and commercialisation opportunities. Proposals should focus on complex diseases having high prevalence and high economic impact.

    The Commission considers that proposals requesting a contribution from the EU of between EUR 4 and 6 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

  • Fri
    29
    Jul
    2016
    Tue
    11
    Apr
    2017

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

    Proposals should compare the use of currently available preventative or therapeutic (pharmacological as well as non-pharmacological) healthcare interventions in adults[1]. While there is no restriction on the diseases or interventions to be the focus of proposals, preference will be given to proposals focusing on interventions with high public health relevance and socio-economic impact, i.e. interventions addressing conditions that are particularly frequent, may lead to co-morbidities, have a high negative impact on the quality of life of the individual and/or are associated with significant costs or where savings can be achieved. A cost effectiveness analysis must be included. Given the focus on existing interventions, proposals will aim to contribute to improve interventions, take decisions about the discontinuation of interventions that are less effective or less cost-effective than others, and make recommendations on the most effective and cost-effective approaches. A comprehensive array of clinical and safety parameters, as well as health and socio-economic outcomes (e.g. quality of life, patient mortality, morbidity, costs, and performance of the health systems) for chosen populations should be assessed. Agreed core outcome sets (COS) should be used as endpoints in conditions where they already exist, in other cases efforts should be made to agree on such COS. Randomised controlled trials, pragmatic trials, observational studies, large scale databases and meta-analyses may be considered for this topic. Where relevant the study population should address gender as well as socio-economic differentials in health and/or any other factors that affect health equity.

    More information and call documents here

  • Fri
    29
    Jul
    2016
    Tue
    11
    Apr
    2017

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

    More information and call documents here

  • Tue
    02
    Aug
    2016
    Tue
    05
    Sep
    2017

    The ERC Proof of Concept Grants aim to maximise the value of the excellent research that the ERC funds, by funding further work (i.e. activities which were not scheduled to be funded by the original ERC frontier research grant) to verify the innovation potential of ideas arising from ERC funded projects. Proof of Concept Grants are therefore on offer only to Principal Investigators whose proposals draw substantially on their ERC funded research.

    More information in the ERC Work Programme 2017 (pp. 36-42)

  • Thu
    08
    Sep
    2016
    Fri
    09
    Sep
    2016
    Ågrenska, Gothenburg, Sweden

    As part of the European project INNOVCare, EURORDIS is organising a workshop on “Integrated Care for People Living with Rare Diseases” - 8-9 September, Gothenburg. Focus on: developing a pilot care pathway, using “case management” to link health, social and community services supporting people with a rare disease.
    agenda
    Registration: contact raquel.castro@eurordis.org before July, 15th

  • Mon
    12
    Sep
    2016
    Wed
    14
    Sep
    2016
    Berlin, Germany

    Genomics-2016 welcomes members around the world focused on learning about Genomics & Pharmacogenomics and its advances; this is your best opportunity to reach the largest assemblage of participants from the Genomics and its allied areas.

    More information and registration here

  • Wed
    14
    Sep
    2016
    Sat
    17
    Sep
    2016
    Heidelberg, Germany

    Through the tremendous advances in the technology of mass spectrometry-based proteomics and its applications, the research has expanded to most areas of biology that deal with proteins. This conference will focus on the application of proteomics to cell biology and unraveling disease mechanisms by addressing conceptually novel ways to study long-standing questions in these fields.

     

    Topics

    • Cell Biology
    • Cell Signaling
    • Omics in Biology
    • Interaction proteomics
    • Chromatin proteomics
    • Genetics and disease

    More information and registration here

  • Sat
    17
    Sep
    2016
    Waterloo, Belgium

    The Center for Vascular Anomalies (FR / EN)at Cliniques universitaires Saint-Luc in Brussels, Belgium, which takes care of a whole variaty of pathologies within the field of Vascular anomalies, organise its 25 years anniversary event on September, 17th. This HCP is represented in VASCern by Pr. Laurence BOON and Pr. Miikka VIKKULA, and Chair the VASCA-WG.

    More information on this event and registration here

  • Wed
    21
    Sep
    2016
    Sat
    24
    Sep
    2016
    Barcelona, Spain

    The 17th Biennial Meeting of the European Society for Immunodeficiencies (ESID 2016) offers unparalleled access to the latest research and analysis in the field of immunodeficiencies.

    More information and registration here

  • Thu
    22
    Sep
    2016
    Fri
    23
    Sep
    2016
    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
    26
    Sep
    2016
    Brussels, Belgium

    The European Reference Network Board of Member States next meeting will take place in Brussels on September, 26th. The Member States representatives should discuss the 24 ERN Project Proposals which were submitted to the European Commission (DG Sante).

  • Mon
    26
    Sep
    2016
    Fri
    30
    Sep
    2016
    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

  • Tue
    27
    Sep
    2016
    Barcelona, Spain

    "Bringing solutions to young rare disease patients"

    Let's discuss the paediatric regulation

    All information here 

  • Wed
    28
    Sep
    2016
    Thu
    29
    Sep
    2016
    Brussels, Belgium

    RD-Action, the European initiative supporting the rare disease community and especially the ERN project, organises a 2-days Workshop on "Exchanging data for virtual care within the ERN Framework". The overall aim of this workshop is to generate and agree guidance and good practices for ERNs to collect and share data for care within the framework of ERNs. Potential Coordinators of the ERN project proposals being currently assessed by the European Commission have been invited to attend.

     

  • 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

  • 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)

  • 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

  • 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

  • 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)


European Reference Network
 
 
To change your subscription, click here.