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HHT new scientific publication
We are proud to report that a new publication by our HHT-WG Chair Prof Claire Shovlin, the British Thoracic Society Clinical Statement on Pulmonary Arteriovenous Malformations, is now available. Pulmonary… |
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The ERN Clinical Patient Management System (CPMS) is officially launched!
The much anticipated Clinical Patient Management System (CPMS) was released by the European Commission (DG SANTE) on Monday, November 20th, 2017 at 12:00 CET! This secure web-based application will be… |
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Rare Disease UK Survey
Rare disease UK has created a survey for rare disease patients and their families. The goal is to gather valuable information about the emotional impact of living with a rare disease… |
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HHT ePAG Meeting
During the HHT Europe annual meeting, which took place in Hamburg this month, the HHT patient organisations members of our VASCERN ePAG for HHT had a face-to-face meeting. The ePAG… |
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European Medicines Agency (EMA) in Amsterdam
It was announced on November 20th, 2017 that the European Medicines Agency (EMA) will relocate to Amsterdam. This agency plays a crucial role in the development and authorization of orphan… |
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Parliamentary Advocates for Rare Diseases
Eurordis has launched the network of Parliamentary Advocates for Rare Diseases. This network of European and national Members of Parliament will advocate in the goal of improving the lives of… |
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VASCERNdays2017: Success of our First Annual Seminar!
More than 80 participants gathered during the VASCERN days 2017, our 1st 2 days Annual Seminar, which took place in Paris on October 13 & 14, 2017. A big thank you… |
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VASCERN is now on Facebook!
The VASCERN coordination team is very happy to announce that we now have an official Facebook page! As planned in our 1st year Action Plan (WP 10 on Communication), this Facebook page will… |
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VASCERN YouTube Channel is launched
The availability of conferences on YouTube via the VASCERN YouTube Channel is part of our first year action plan (Work Package 7). Our objective is to share content about: VASCERN… |
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Tue05Dec2017
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Tue05Dec20175 PM (GMT +1)Videoconference call - Webex
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Thu07Dec2017Fri08Dec2017Rome, Italy
RD-ACTION and DG Sante organise a workshop on "How can ERNs generate, appraise and use clinical practice guidelines, to enhance the impact and deployment of consensus guidelines in national health systems?"
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Fri08Dec201710.30 AM (GMT+1)Videoconference call - Webex
The VASCERN Council meets every 4 months, or more depending on needs. This is the 3rd VASCERN Council meeting, following Vilnius (March) and virtual meeting last July.The Council is chaired by the Coordinator, Members are the Chairs of our Working Groups.
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Sat09Dec2017
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Mon11Dec2017
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Wed13Dec2017
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Mon18Dec2017
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Mon18Dec2017
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Wed28Feb2018
All information at https://www.rarediseaseday.org/
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Wed07Mar2018Sat10Mar2018Bologna, Italy
All information about the RE(ACT) CONGRESS & registration available here
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Wed11Apr2018Fri13Apr2018Tutzing/Starnberger, Germany
More information at www.research4rare.de
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Thu03May2018Sat05May2018Amsterdam, The Netherlands
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Thu10May2018Sat12May2018Vienna, Austria
ECRD – the European Conference on Rare Diseases & Orphan Products is the largest multi-stakeholder gathering in Europe for the rare disease community covering research, development of new treatments, healthcare, social care, public health policies and support at European, national, regional and international levels.
All information & registration available here
Deadline to register: 27 April 2018
Early-bird cut off date: 15 March 2018 -
Wed30May2018Fri01Jun2018Amsterdam
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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Mon11Jun2018Fri15Jun2018Barcelona, Spain
The EURORDIS summer school is taking place in Barcelona from the 11 - 15 June 2018. This year, the summer school will focus on educating patients and researchers on the regulatory process of orphan medicinal products in Europe in order to strengthen their advocacy skills. The last day to register for the English edition is November 30th, 2017 and the last day to register for the Spanish edition is December 15th, 2017.
All information here
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Thu11Oct2018Fri12Oct2018To be confirmed
VASCERN Days 2018 (2 days annual seminar) will take place on October 11-12, 2018.
Location is to be confirmed!
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Thu07Mar2019Sun10Mar2019Bologna, Italy
SAVE THE DATE - RE(ACT) Congress 2018
Visit the RE(ACT) Community website
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Thu07Dec2017
Publication of the call of December 7th!
JTC 2018: "Transnational research projects on hypothesis-driven use of multi-omic integrated approaches for discovery of disease causes and/or functional validation in the context of rare diseases"
More information here
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Tue09Jan20185 PM (GMT +1)
The ERN Call for Specific Grant Agreement (SGA) for the 2nd year of ERN operation (March 2018-February 2019), under the ERN 5 years Framework Partnership Agreement, has been launched on November, 22nd. The deadline to answer is on January, 9th, 2018.
VASCERN has signed a 5 years Framework Partnership Agreement (FPA) with the European Commission (2017-2022), therefore is eligible for this European Union funding for ERNs, and was invited to answer this call for a second year SGA.
We are currently working on our proposal for our 2nd year Action Plan and budget to answer this call.
Support for ERNs Coordination & Operation is provided by the European Union 3rd Health Programme.
The European Union is co-funding 60% of the total budget. The maximum amount of EU contribution is 200 000 euros by ERN.
More information
Database of EU 3rd Health Programme co-funded projects
Database: info on VASCERN Framework Partnership Agreement
Database: info on VASCERN Specific Grant Agreement (March 2017-February 2018)
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Wed18Apr2018
The European Commision Call for the European Joint Programme Co-fund on Rare Diseases has been published:
http://ec.europa.eu/research/participants/portal/desktop/en/opportunities/h2020/topics/sc1-bhc-04-2018.html
The overall objective is to implement a European Joint Programme (EJP) Cofund for Rare Diseases which would create a research and innovation pipeline "from bench to bedside" ensuring rapid translation of research results into clinical applications and uptake in healthcare for the benefit of patients.
The initiative should follow the policies and contribute to the objctives of the International Rare Diseases Research Consortium (IRDiRC).