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 him to the specialization of dermatology and vascular anomaly management, the challenges of working in the rare disease field and…
VASCERN Newsletter #42 - August/September 2020
VASCERN Spotlights: Andrea Diociaiuti
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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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Six new language subtitles added to the Pills of Knowledge video on Klippel-Trenaunay syndrome!
The Pill of Knowledge (PoK) video on Klippel-Trenaunay syndrome (KTS) has just had 6 new language subtitles added! Since its publication in January 2020, VASCERN members of the Vascular… |
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New Position Paper from the Hereditary Haemorrhagic Telangiectasia Working Group on Cerebral Screening in Adults and Children with HHT
A new position paper by the Hereditary Haemorrhagic Telangiectasia working group (HHT WG), entitled European Reference Network for Rare Vascular Diseases (VASCERN) position statement on cerebral screening in adults and… |
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Tue06Oct202010:30AM-12:00PM (CET)Videoconference call - Webex
The monthly meeting of this interERN Working Group will take place online on October 6th, 2020 at 10:30 AM (CET). Romain ALDERWEIRELDT will be representing VASCERN as the Chair of this WG.
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Thu08Oct2020Sat10Oct2020Online
Registration is now open for the GenTAC Aortic Summit 2020, one of the premier meetings in the world focused on sharing knowledge and advancing research on genetic aortic disease!
The meeting, which is specifically for scientists and clinicians, will be virtual, with presentations on-demand beginning September 29, 2020 and live discussions on October 8 and 10, 2020.
The Call for Abstracts for the Aortic Summit is available as well. Abstracts for innovative research and clinical topics related to advancing therapeutic strategies and management should be submitted by September 11. Six abstracts will be chosen for live presentation on Thursday, October 8, from 7:30 - 8:30 pm, during our Cocktails and Posters session. All other abstracts will be available for viewing in our exhibit hall where questions and answers can be posted.
The GenTAC Aortic Summit, a biennual event, originated in 2009 as part of the mission of the National Registry of Genetically Triggered Thoracic Aortic Aneurysms and Related Conditions (GenTAC). Its objective are to share current knowledge of the scientific underpinnings of genetic aortic disease; review current best practices related to diagnosis and treatment; and foster scientific and educational exchange.
Professor Guillaume Jondeau (VASCERN coordinator) will give an update of the VASCERN registry during the "Registry Update" session on October 10th, 2020.
For more information and to register for the GenTAC Aortic Summit 2020, please click here.
For the full schedule please click here
Please find the full announcement here
If you have questions, please email GenTAC@marfan.org
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Fri09Oct20204:00PM-5:30PM (CEST)GoToMeeting
The 2nd cross-ERN surgical based Working Group Meeting will take place online on October 9th, 2020 at 4:00 PM (CEST).
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Mon12Oct20205:00PM-6:00PM (CET)Videoconference call - Webex
The VASCERN MSA-WG Monthly Meeting will be taking place on October 12th, 2020 at 5 pm (Paris time).
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Tue13Oct202010:00AM-11:30AM (CET)Zoom
The VASCERN ePAG Monthly Meeting will be taking place on October 13th, 2020 from 10 am to 11:30 am (Paris time).
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Thu15Oct20203:00PM-4:00PM (CET)Videoconference call - Webex
The VASCERN Registry Technical Teams Working Group Meeting will take place online on Thursday October 15th, 2020 from 3 PM to 4 PM (CET).
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Thu22Oct2020Sat24Oct2020Online
Due to the COVID-19, VASCERN's annual seminar, VASCERN Days 2020, will take place online from October 22-24th, 2020.
Further details to be announced.
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Sat07Nov2020Sun08Nov2020Paris
Due to the recent global updates with COVID-19, the Society has decided to postpone the European Learning Conference and HEDGE study screening in Paris, France, which was due to take place March 21-22, 2020.
Both the conference and the HEDGE screening have been rescheduled for November 7-8, 2020. November 7, 2020, will be health professionals day (in place of March 21) and November 8, 2020, will be community day for patients, their families and caregivers (in place of March 22).
The Ehlers-Danlos Society brings together the leading world experts to discuss the latest medical and scientific information about the Ehlers-Danlos syndromes and hypermobility spectrum disorders.
For both Professionals Day and Patients Day, sessions will be translated into Spanish, French, German, Dutch, and Italian.
For more information, click here.
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Mon16Nov2020Wed18Nov2020Barcelona, 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 November 16th to 18th, 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: October 19th, 2020
- Abstract submission deadline: October 19th, 2020
- Payment deadline: November 1st, 2020
For more information on this event (programme and registration), take a look here.
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Thu26Nov2020Fri27Nov2020Brussels, Belgium
The ERN Coordinators Group Meeting will take place on November 26-27th, 2020 in Brussels, Belgium. 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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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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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
