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VASCern
European Network on Rare Multisystemic Vascular Diseases
Newsletter #4 - September 2016
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IRDiIC Report on Small Population Clinical Trials
This report (July 2016) tackles the challenges of conducting clinical trials in Rare Diseases.
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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…
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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…
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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…
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EU Report on Pharmacovigilance
Commission publishes report on activities to monitor medicine safety in EU. More information here
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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…
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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…
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VASCern Presentation
An updated presentation of VASCern Members, Governance, Structure and Working Groups is available here
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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…
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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…
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Up-coming events
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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
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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
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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
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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
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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)
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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
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Boston, USA
All information and registration here
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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
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Boston, US
All information and registration here
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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
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Topic identifier: SC1-PM-17-2017 Types of action: RIA Research and Innovation action
More information and call documents here
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Brussels, Belgium
All information and registration here
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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
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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 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
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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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Boston, Massachusetts, USA
All information and registration 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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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
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