European Network on Rare Multisystemic Vascular Diseases Newsletter #1 - May 2016
Dear all,
We are glad to send you our ERN Rare Multisystemic Vascular Diseases Newsletter #1, and wish you a pleasant reading.
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Global Aortic Awareness Day
All Aortic Dissection Awarness Day are available for download here |
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EURORDIS EPAGs representatives elected
EURORDIS Patient Advocacy Groups representatives have been elected. For the ERN Rare Multisystemic Vascular Diseases, several representatives are elected: Luisa Maria Botella (HTT Spain), Paolo Federici (Associazione Fondazione Italiana HHT 'Onilde Carini'),… |
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ERN Application
The European Commission has released new versions of the official templates for the ERN Application: HCP and Network application & self assessment forms. These revised forms must replace the former… |
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ERN National Endorsement
Each HealthCare Providers applying to be Member of European Reference Networks should be endorsed nationnally. The HCPs / Centers of Excellence must indeed provide a letter of national endorsement together… |
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Defining our Network
Our Members are regularly brainstorming and liaising to define our Network and conduct the self-assessment process. To stay updated on our ERN project development, visit our Network page ! |
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Call to Patient Representatives
In order to ensure patients participation and meaningful representation within our ERN, we have launched a call for participation to Patient Organisations. Patients representatives are invited to contact us to… |
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EURORDIS Call to Patient Organisations
In the framework of ERNs, EURORDIS, the association which represent the Voice of Rare Diseases Patients in the European Union, will set-up "EURORDIS Patient Advisory Groups - EPAGs" linked to… |
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ERN Info Day
The European Commission has organised the ERN Info Day in Brussels on April, 7th. This event gathered stakeholders interested in the ERN project and ERN Coordinators. Following the morning presentations on… |
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Wed18May2016Fri20May2016Tübingen (Germany)
This congress will address topics such as : high-throughput methods and data analysis, functional imaging in multiomics approaches, application of PM in clinical decision making and translation of PM into clinical trials in state of the art lectures, hands on workshops and interactive discussion rounds.
More information here
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Wed25May2016Brussels
ERN Coordinators applicants are going to meet in Brussels on May, 25th with the European Commission. During this meeting, the status of ERN applications, progresses and difficulties will be discussed.
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Thu26May2016Sat28May2016Edimbourg
The European Conference on Rare Diseases and Orphan Products is organised by EURORDIS - the association which represents the Voice of Patient Organisations throughout Europe - with the support of the European Commission. It will be an opportunity to meet all European Partners and stakeholders involved in Rare Diseases, thus fostering European cooperations. More info and registration here
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Wed01Jun2016Thu02Jun2016Brussels
The European Commission, DG Research and Innovation, organise a conference on Personalised Medicine. This two days event aim to foster research on Health new technologies, innovation, sustainable health. More information and inscription on the European Commission dedicated page here
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Thu22Sep2016Fri23Sep2016Washington 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
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Mon26Sep2016Fri30Sep2016National 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
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