VASCern
European Network on Rare Multisystemic Vascular Diseases
Newsletter #6 - November 2016
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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…
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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,…
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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…
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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…
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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.
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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
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Up-coming events
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Brussels, Belgium
During this meetingn, the European Commission will inform ministers on the European reference networks.
More information here
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Brussels, Belgium
The ERN Board of Member States (maximum of 2 representatives from each EU Member States and EEA) and will meet on December 15th to take the decision on the approval of the Networks and HCPs positively assessed by the Independant Assessment Body.
Read the Rules of Procedures of the Board of MS of the ERNs
More information on the BoMS here
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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
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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
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All information and registration here
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How to get involved and support Rare Diseases Day 2017: here
All information available here
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Boston, Massachusetts, USA
All information and registration here
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London, UK
All information and registration here
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Prague, Czech Republic
In Prague, over two days, 14 leading experts will review recent advances across the spectrum of cardiology. Interact with colleagues, exchange information and ideas, and get updated – helping you to provide the best care for your patients!
Programme: here
All information and registration here
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Lyon, France
The European Society of Vascular Surgery organises its 31th annual meeting in Lyon on September, 22-23rd 2017.
All information here
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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
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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
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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
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All information on the calls for Innovative Training Networks available here
Deadline: January 10th 2017
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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
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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
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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)
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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
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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
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Topic Identification: SC1-HCO-07-2017
Stay tuned: here
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Topic identifier: SC1-HCO-03-2017 Types of action: ERA-NET-Cofund ERA-NET Cofund
More information here
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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
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Topic identifier: SC1-HCO-08-2017 Types of action: CSA Coordination and support action
More information and call documents here
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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
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Topic identifier: SC1-PM-02-2017 Types of action: RIA Research and Innovation action
Deadline: April 11th 2017
More information and call documents: here
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Topic identifier: SC1-PM-10-2017 Types of action: RIA Research and Innovation action
Deadline: April 11th 2017
More information and call documents here
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Topic identifier: SC1-PM-20-2017 Types of action: RIA Research and Innovation action
Deadline: April 11th 2017
More information and call documents here
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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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