VASCERN Newsletter #43 - October 2020
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VASCERN Days 2020: accomplishment of our first online annual seminar!
Due to COVID-19, our annual seminar, VASCERN Days 2020, could not be held in Paris as planned. Luckily, we were able to arrange 3 days of online meetings and networking… |
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New video shows benefits of making FAIR Registries
A new video, highlighting the importance of FAIR registries, appeared in the October newsletter of the International Society for the Study of Vascular Anomalies (ISSVA). It is a great video… |
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Continuous Monitoring of ERNs: Data submitted for Semester 1 of 2020
The VASCERN Coordination and Project Management team submitted the data for the 18 core ERN indicators required by the European Commission for the first semester of 2020! This monitoring exercise… |
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New VASCERN Registries Project Poster
The VASCERN Registries Project launched on May 1st, 2020 after our proposal was selected to receive funding from the Health Programme of the European Union under the call for proposals… |
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CPMS virtual meetings this month
This month, members of the Vascular Anomalies Working Group (VASCA WG) held a virtual meeting using the Clinical Patient Management System (CPMS) in order to discuss two new patients cases.… |
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Success of the first ever International E3 Summit!
The first International E3 Summit, powered by The Marfan Foundation and VASCERN has come to an end! This historic event took place from Aug 25 - Sep 12th, 2020 and… |
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5 new training videos on how to use CPMS now available!
Ibrahim Donmez, our IT Helpdesk & End User Support Specialist, has made 5 new training videos regarding the use of the Clinical Patient Management System (CPMS) and they are now available… |
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Download the new version 2 of VASCERN App now!
VASCERN app version 2 was officially launched in August and if you haven't had a chance to download it yet and try it out, now is the time! In order… |
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Two external guest patient cases from Serbia and Portugal discussed using the CPMS
Thanks to the Clinical Patient Management System (CPMS), members of the Vascular Anomalies (VASCA) Working Group have recently been able to discuss two guest patient cases from Portugal and Serbia (countries with no… |
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VASCERN Spotlights: Andrea Diociaiuti
In this edition of VASCERN Spotlights we interview Dr. Andrea Diociaiuti, a dermatologist from Italy and member of the Vascular Anomalies Working Group (VASCA WG). Dr. Diociaiuti shares what attracted… |
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Mon09Nov2020Fri13Nov2020Online
The International Congress on the Effects of COVID19 on People with Rare Diseases, organised by Share4Rare, will be held online on November 9th, 11th and 13th, 2020.
The congress arises from the recent creation of the international registry of patients with rare diseases and COVID-19, which aims to improve the current knowledge of the effects of this new infectious disease in rare disease patients. The initiative is fostered by Share4Rare, aimed at connecting and educating families affected by rare diseases, as well as promoting collaborative research through the sharing of clinical information from relatives and patients.
Register here
Access the full agenda here
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Mon09Nov20205:00PM-6:00PM (CET)Videoconference call - Webex
The VASCERN MSA-WG Monthly Meeting will be taking place on November 9th, 2020 at 5 pm (Paris time).
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Tue10Nov202010:00AM-11:30AM (CET)Zoom
The VASCERN ePAG Monthly Meeting will be taking place on November 10th, 2020 from 10 am to 11:30 am (Paris time).
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Mon16Nov20201:00PM-2:30PM (CET)Videoconference call - Webex
The monthly meeting of this interERN Working Group will take place online on November 16th, 2020 at 1:00 PM (CET). Romain ALDERWEIRELDT will be representing VASCERN as the Chair of this WG.
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Mon16Nov20205:30PM-6:30PM (CET)Videoconference call - Webex
The VASCERN PPL-WG Monthly Meeting will take place on November 16th, 2020 at 5:30 pm (Paris time).
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Wed18Nov20203:45PM-5:00PM (CET)Videoconference call - Webex
The VASCERN VASCA-WG Monthly Meeting will take place on November 18th, 2020 at 3:45 pm (Paris time).
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Mon23Nov20205:00PM-6:00PM (CET)Videoconference call - Webex
The VASCERN HTAD-WG Monthly Meeting will take place on November 23rd, 2020 at 5 pm (Paris time).
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Wed25Nov20205:00PM-6:30PM (CET)Online
The Internal ERN Coordinators Group Meeting will take place online on November 25th, 2020 at 5:00PM (CET).
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Thu26Nov20203:00PM-4:00PM (CET)Videoconference call - Webex
The VASCERN Registry Technical Teams Working Group Meeting will take place online on Thursday November 26th, 2020 from 3 PM to 4 PM (CET).
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Fri27Nov20209:00AM-4:00PM (CET)Videoconference call - Webex
The ERN Coordinators Group Meeting will take place online on November 27th, 2020 from 9 AM to 4 PM (CET). Professor Jondeau and Marine Hurard will be attending.
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Mon30Nov20209:00AM-1:00PM (CET)Online
The European Medicines Agency (EMA) is organising a Workshop on Support for Orphan Medicines Development which will take place online on November 30th, 2020 from 9AM-1pm.
This virtual event aims to encourage early and efficient interactions with the regulators by highlighting pre-marketing support in medicine development in rare diseases. Existing tools such as orphan designation, protocol assistance and PRIME scheme will be highlighted and explained in the context of early product development strategy.
For the agenda click here
To register click here
For more information click here
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Thu17Dec20203:00PM-4:00PM (CET)Videoconference call - Webex
The VASCERN Registry Technical Teams Working Group Meeting will take place online on Thursday December 17th, 2020 from 3 PM to 4 PM (CET).
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Wed13Jan2021Sat16Jan2021Berlin, Germany
The International Congress Of Research On Rare And Orphan Diseases, co-organized with IRDiRC and EJP-RD, has been postponed due to the COVID-19. The event was due to take place from March 11th to 14th, 2020 and will now take place from January 13th to 16th, 2021.
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Mon01Feb2021
A preliminary announcement for the European Joint Programme on Rare Diseases (EJP RD) Joint Transnational Call (JTC) 2021 has just been released!
The topic for this next call will be “Social sciences and Humanities Research to improve health care implementation and everyday life of people living with a rare disease”
Transnational research proposals must cover at least one of the following areas, which are equal in relevance for this call:
- Health & social care services research to improve patient and familial/household health outcomes
- Economic Impact of Rare diseases
- Psychological and Social Impact of Rare diseases
- Studies addressing the impact/burden of the delay in diagnosis and of the lack of therapeutic intervention.
- e-Health in rare diseases: Use of innovative technology systems for care practices in health and social services
- Development and enhancement of health outcomes research methods in rare diseases
- Effects of pandemic crisis and the global outbreak alert and response on the rare disease field, and the emergence of innovative care pathways in this regard.
Each consortium submitting a proposal must involve at least three principal investigator partners from at least three different countries that are joining this Call JTC 2021. The maximum duration of the project is 3 years.
The call is scheduled to open in December, with a pre-proposal submission deadline in February. More information to come soon...stay tuned!
Find the full preliminary announcement here
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Thu06May2021Sat08May2021Copenhagen, Denmark
The 10th International Conference of the International Lymphoedema Framework will take place in Copenhagen, Denmark, from May 6-8, 2021 (new dates due to COVID-19).
Pernille Henriksen, ePAG Co-Chair for PPL WG, will be present at this event and will give a presentation entitled Infections; the experiences, the fear and the solutions from a patient point of view for the patient day on Saturday, May 8th, 2021.
See the preliminary programme here.
For more information, check out their website here.
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Mon14Jun2021Wed16Jun2021Barcelona, Spain
Due to the COVID19, the EMBO Workshop on Vascular Malformations has been postponed. The event was due to take place from April 1st to 3rd, 2020 and will now take place from June 14th -16th, 2020 in Barcelona, Spain.
Professor Miikka VIKKULA, Chair of the VASCERN Vascular Anomalies Working Group (VASCA WG), will be one of the speakers!
REGISTRATION DEADLINE - 17 May 2021
ABSTRACT SUBMISSION DEADLINE - 17 May 2021
PAYMENT DEADLINE - 1 June 2021
For more information on this event (programme and registration), take a look here.
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Thu05Nov2020
The Connecting Europe Facility (CEF) Telecom -2020-2 eHealth call (implemented by The Innovation and Networks Executive Agency (INEA)) was published on June 30th, 2020!
Read the call document here
The actions funded under this call for proposals should contribute to:
- The continued use of the ERN Collaborative Platform (ECP) and of the Clinical
Patient Management System (CPMS), which facilitate access to highly
specialised knowledge and care for patients suffering from rare and complex
diseases. - The improvement of current functionalities and adding of new functionalities to
the ERN Clinical Patient Management System, which will enhance the possibility
to collect and analyse clinical data across borders to support public health and
research, and also better adapt the CPMS to the ERN specific clinical needs. - The promotion of the European Reference Networks within the medical
community by suitable learning and training activities.
Deadline for submission of proposals is Thursday 5 November 2020 (5PM Brussels time).
Evaluation of proposals November 2020 – January 2021 (indicative)
Consultation of the CEF Committee March – April 2021 (indicative)
Adoption of the Selection Decision April 2021 (indicative)
VASCERN will be submitting a proposal in order to ensure the continuation and improvement of the IT services offered to our members (helpdesk, eLearning activities, monitoring system support, and other IT related activities).
A 2020-2 CEF Telecom call virtual Info Day will occur on 16 July 2020.
More information on the call can be found here
- The continued use of the ERN Collaborative Platform (ECP) and of the Clinical
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Mon01Feb2021
A preliminary announcement for the European Joint Programme on Rare Diseases (EJP RD) Joint Transnational Call (JTC) 2021 has just been released!
The topic for this next call will be “Social sciences and Humanities Research to improve health care implementation and everyday life of people living with a rare disease”
Transnational research proposals must cover at least one of the following areas, which are equal in relevance for this call:
- Health & social care services research to improve patient and familial/household health outcomes
- Economic Impact of Rare diseases
- Psychological and Social Impact of Rare diseases
- Studies addressing the impact/burden of the delay in diagnosis and of the lack of therapeutic intervention.
- e-Health in rare diseases: Use of innovative technology systems for care practices in health and social services
- Development and enhancement of health outcomes research methods in rare diseases
- Effects of pandemic crisis and the global outbreak alert and response on the rare disease field, and the emergence of innovative care pathways in this regard.
Each consortium submitting a proposal must involve at least three principal investigator partners from at least three different countries that are joining this Call JTC 2021. The maximum duration of the project is 3 years.
The call is scheduled to open in December, with a pre-proposal submission deadline in February. More information to come soon...stay tuned!
Find the full preliminary announcement here
