Newsletter from the ERN Multisystemic Vascular Diseases

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VASCern

European Network on Rare Multisystemic Vascular Diseases

Newsletter #5 - October 2016

image E-Rare 3 Call for Transnational Research Projects for Innovative Therapeutic Approaches for Rare Diseases

The European Research Area Network ERA-Net "E-Rare" for Research Programmes on Rare Diseases 3rd phase : E-Rare 3 2014-2019 includes new joint transnational calls for research proposals in order to encourage…

image VASCern Technical Assessment Preliminary Results

VASCern Project Technical Assessment is going well, preliminary results are the following: Documentation review: out of 6 HCPs (including the Coordinating Center) selected for documentation review, 5 got positive reports. The…

image European Joint Programme project on Rare Diseases

In the framework of the preparation of the Horizon 2020 calls for 2018-2020 (Societal Challenge 1, Health, Demographic change and Well-being), the European Commission has launched a Consultative Group on…

image EU Coding Platform (SEC) for tissues and cells

The Commission has launched the web-based EU Coding Platform to support healthcare professionals and national competent authorities in tracing donated tissues and cells from donor to recipient in the entire…

image INNOVCare Conference Reports

Workshop on Scaling Innovative Care Delivery for Rare Diseases and Complex Conditions was held in October by the INNOVCare Project. This project aims at bridging the gaps between health, social…

image EU Member State data on cross-border healthcare

The European Commission has published data from 23 EU Member States on their use of the Cross-border Healthcare Directive (legal basis for the establishment  of ERNs). The European Health Commissioner Vytenis Andriukaitis…

image Take the Survey: Impact of Rare Diseases on daily life

This survey (available in 23 EU languages) will help EURORDIS, a European non-profit and non-governmental patient-driven alliance of patient organisations, to better understand the needs of people living with a…

image VASCern Eligibility for Technical Assessment

Following the eligibility check by the European Commission, the Independant Assessment Body (ACSA - Agencia de Calidad Sanitaria de Andalousia) has notified VASCern and its 31 HCP Member Applicants of…

image IRDiRC 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…


Up-coming events

  • Tue
    08
    Nov
    2016
    Wed
    09
    Nov
    2016
    Brussels, Belgium

    The EPF conference “Patient and family empowerment for better patient safety” will explore these issues, including:
    •The ethics of patient involvement in safety: taking responsibility or being burdened with responsibility?
    •Challenges for patient empowerment and involvement in acute care settings
    •Challenges for healthcare professionals: is a fundamental culture change needed?
    •Communication: a risk factor or an opportunity to improve safety?

    All info here

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

    All information and registration here

  • Thu
    24
    Nov
    2016
    Rome, Italy

    The aim of the conference is to disseminate the findings from the RARE-Bestpractices project and offer a forum for discussing with relevant stakeholders how this work could be taken into account in delivering better health decision making and health policies for rare diseases.

    More 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
    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

  • Thu
    29
    Jun
    2017
    Fri
    30
    Jun
    2017
    London, UK

    Rare Disease Congress is a two -day programme of presentations, panel discussions and interactive dialogue at the conference on leading the way in the Rare Disease research development, which will take place from June 29-30 2017 in London, UK.

    More information and registration here

  • 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


EU Calls

  • 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

  • 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

  • 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

    • The key objective of this pilot project is to set up a registry of rare congenital malformations as a part of rare diseases national registers. The project should be implemented at a national level.
    • The secondary aim of the project is to provide an example of how to extend an existing birth defects registration and surveillance system to a rare diseases registration system.
    • The birth defects registration system has already been set up in several MSs as part of the EUROCAT surveillance network. The pilot project provides a model for exploring whether a birth defects registry can be extended to form a rare diseases registry.
    • The pilot project should contribute to the development of an EU Platform on Rare Diseases Registration to provide a common access point to data collections on rare diseases across Europe and to be compatible with platform tools.

    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)

  • 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

    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

  • 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. 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

  • 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

  • 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. 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

  • Tue
    11
    Apr
    2017

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

    Deadline: April 11th 2017

    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

  • Tue
    11
    Apr
    2017

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

    Deadline: April 11th 2017

    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

  • 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)