• Mon
    28
    Sep
    2020

    The second European Joint Programme on Rare Diseases (EJP RD) Research Training Workshop Call is now open (from August 31st - September 28th, 2020)!

    The goal of the workshops is to train researchers and clinicians affiliated to ERN-Full  Members or Affiliated Partners in relevant topics on rare diseases research. Training themes may include innovative research methodologies, diagnostic research methodologies, interdisciplinary treatment approaches, such as gene therapy and transplantation, etc. Providing a cross-ERN added value is highly desired.

    The workshops will be delivered as two-day events. Topics can be proposed by clinicians/investigators affiliated to ERN-institutions or EJP RD beneficiaries.  As of 2021, there will be two deadlines for workshop topic applications per year, in January and June.

    Topics will be selected taking into consideration several elements such as:

    • Addressing cross-cutting issues relevant for ERNs
    • Multidisciplinary topics
    • Fostering collaboration (within and between ERNs)
    • No overlap with other EJP RD training activities
    • Relevance of the topic for the ERN(s)
    • Benefits for the RD community
    • Appropriate training methodology

    The workshops selected for funding will be attended only by individuals affiliated to ERN institutions. Participants will be selected by the coordinator of the ERN managing institution and the workshop organizer based on pre-defined criteria. The costs for the workshop organization will be covered up to a limit of € 25,000.

    Applicants/Application profile:

    The applicant submitting workshop topics must fit one of the following:

    • Affiliated to any EJP RD beneficiary institution. The list of EJP RD beneficiary organizations can be found here 
    • Affiliated to an ERN full member. The list of full ERN members per country and per network can be found here
    • Affiliated to an ERN Affiliated Partner institution at the time when the application is submitted, as well as during the period of the execution of the workshop.

     

    Deadline to apply is September 28th, 2020

    For the full call text please click here

    More information on the call here

  • Mon
    28
    Sep
    2020
    Fri
    02
    Oct
    2020
    Online

    An international training course titled "International Summer School on Rare Disease Registries and FAIRification of Data”, Istituto Superiore di Sanità, Rome, Italy, will occur online from September 28th to October 2nd, 2020.

    This initiative is a part of a series of training courses included in the framework of the European Joint Programme on Rare Diseases (EJP RD). For more information about the EJP RD, have a look here: https://www.ejprarediseases.org/

    The 5 days training course is composed of two modules, the first three days on Rare Disease Registries and the final two days on FAIRification of Data. You can attend a single training module or the entire training course.

    Online registration until July 19th, 2020: https://sondage.inserm.fr/index.php/257338/lang-en

    Programme and other information: https://www.ejprarediseases.org/wp-content/uploads/2020/06/EJP-RD_Summer-School-RD-RegistriesFAIRification.pdf

    Important dates, deadlines, and further information: https://www.ejprarediseases.org/index.php/international-summer-school-on-rare-disease-registries-and-fairification-of-data-2/

  • Mon
    28
    Sep
    2020
    5:00PM-6:00PM (CET)Videoconference call - Webex

    The VASCERN HTAD-WG Monthly Meeting will take place on September 28th, 2020 at 5 pm (Paris time).

  • Thu
    01
    Oct
    2020
    Sat
    03
    Oct
    2020
    Copenhagen, Denmark

    The 10th International Conference of the International Lymphoedema Framework will take place in Copenhagen, Denmark, from October 1-3, 2020.

    For more information, check out their website here.

  • Tue
    06
    Oct
    2020
    10:30AM-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.

  • Thu
    08
    Oct
    2020
    Sat
    10
    Oct
    2020
    Online

    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

     

     

     

     

  • Fri
    09
    Oct
    2020
    4:00PM-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).

  • Mon
    12
    Oct
    2020
    5:00PM-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).

  • Tue
    13
    Oct
    2020
    10:00AM-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).

  • Thu
    15
    Oct
    2020
    3:00PM-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).

  • Mon
    19
    Oct
    2020
    5:30PM-6:30PM (CET)Videoconference call - Webex

    The VASCERN PPL-WG Monthly Meeting will take place on October 19th, 2020 at 5:30 pm (Paris time).

  • Wed
    21
    Oct
    2020
    3:45PM-5:00PM (CET)Videoconference call - Webex

    The VASCERN VASCA-WG Monthly Meeting will take place on October 21st, 2020 at 3:45 pm (Paris time).

  • Thu
    22
    Oct
    2020
    Sat
    24
    Oct
    2020
    Online

    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.

  • Mon
    26
    Oct
    2020
    5:00PM-6:00PM (CET)Videoconference call - Webex

    The VASCERN HTAD-WG Monthly Meeting will take place on October 26th, 2020 at 5 pm (Paris time).

  • Thu
    05
    Nov
    2020

    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

  • Sat
    07
    Nov
    2020
    Sun
    08
    Nov
    2020
    Paris

    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.

  • Mon
    16
    Nov
    2020
    Wed
    18
    Nov
    2020
    Barcelona, 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.

  • Thu
    26
    Nov
    2020
    Fri
    27
    Nov
    2020
    Brussels, 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.

  • Wed
    13
    Jan
    2021
    Sat
    16
    Jan
    2021
    Berlin, 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.

    • To see the agenda: click here
    • To see the time table: click here
    • To register: click here
  • Mon
    01
    Feb
    2021

    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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