• 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
  • 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.

  • 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.

  • 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.

  • 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

  • Thu
    22
    Oct
    2020
    Sat
    24
    Oct
    2020
    Paris, France

    VASCERN's annual seminar, VASCERN DAYS 2020, will take place this year from October 22-24th, 2020 in Paris, France.

    Further details to be announced.

  • 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.

  • 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).

  • Mon
    21
    Sep
    2020
    5:30PM-6:30PM (CET)Videoconference call - Webex

    The VASCERN PPL-WG Monthly Meeting will take place on September 21st, 2020 at 5:30 pm (Paris time).

  • Wed
    16
    Sep
    2020
    3:45PM-5:00PM (CET)Videoconference call - Webex

    The VASCERN VASCA-WG Monthly Meeting will take place on September 16th, 2020 at 3:45 pm (Paris time).

  • Mon
    14
    Sep
    2020
    Thu
    17
    Sep
    2020
    Online

    The European Joint Programme on Rare Diseases (EJP RD) General Assembly and consortium meeting will exceptionally take place online this year and will run from September 14th to September 17th, 2020.

    The agenda and more details will be announced soon!

  • Mon
    14
    Sep
    2020
    5:00PM-6:00PM (CET)Videoconference call - Webex

    The VASCERN MSA-WG Monthly Meeting will be taking place on September 14th, 2020 at 5 pm (Paris time).

  • Wed
    02
    Sep
    2020
    6:00PM-7:30PM (CET)Videoconference call - Webex

    The 11th VASCERN Council Meeting will take place on September 2nd, 2020 from 6 pm to 7:30 pm (Paris time).

  • Tue
    01
    Sep
    2020

    The Call for the Research - European Joint Programme on Rare Diseases (EJP RD) Networking Support Scheme (NSS) is now open!

    The scheme will provide financial support to applicants for fostering organization of workshops or conferences for new research networks or existing/expanding research networks to strengthen collaborations and to enable exchange of knowledge.

    Eligible applicants to apply for the NSS are health care professionalsresearchers and patient advocacy organizations from the following countries involved in the EJP RD (in alphabetical order):

    Armenia*, Austria, Belgium, Bulgaria*, Croatia*, Czech Republic*, Denmark, Estonia*, Finland, France, Germany, Georgia*, Greece, Hungary*, Ireland, Israel, Italy, Latvia*, Lithuania*, Luxembourg, Malta*, Norway, Poland*, Portugal, Romania*, Serbia*, Slovakia*, Slovenia*, Spain, Sweden, Switzerland, The Netherlands, Turkey*, United Kingdom.

    The countries that are indicated with an asterisk (*) are usually seen as underrepresented countries.

    At least one Principal applicant and two co-applicants from three different countries mentioned above have to apply together for support of a Networking event.

    Maximum budget for networking event: € 30,000

    The NSS is open on a continuous basis. The applications will be collected on the following dates:

    • June 2, 2020 at 14:00 (CEST)
      IMPORTANT. This collection date is cancelled due to the COVID-19 outbreak.
    • September 1, 2020 at 14:00 (CEST)
      IMPORTANT. Exceptional extension in comparison to Call text: events may be organised between 6 and 18 months after the application date.
    • December 1, 2020 at 14:00 (CET)

    All information, including the call documents, can be found on the EJP-RD website here.

  • Sat
    29
    Aug
    2020
    Tue
    01
    Sep
    2020
    Online

    The European Society of Cardiology (ESC) Congress 2020 will take place online from August 29th to September 1st, 2020.

    For more information visit the event's website here.

  • Tue
    25
    Aug
    2020
    Sat
    12
    Sep
    2020
    Online

    VASCERN has partnered with The Marfan Foundation to co-lead the upcoming online E3 International Summit: Educating, Empowering, and Enriching Our Community, which will run from Tuesday, August 25th – Saturday, September 12th, 2020 and will feature medical experts from all over the world on a variety of topics related to the diagnosis and treatment of Marfan syndrome, Loeys-Dietz syndrome (LDS), vEDS (Vascular Ehlers-Danlos syndrome), and related conditions.

    CLICK HERE TO REGISTER NOW!

    Members of the Heritable Thoracic Aortic Diseases (HTAD) and Medium-Sized Arteries (MSA) Working Groups, along with other world renowned experts, will offer live online presentations and question and answer sessions. A selection of quality of life presentations will also be on the schedule in order to complement the medical information. In order to make this program accessible to a larger international audience, medical presentations will be available in six languages: English, Spanish, Italian, French, German, and Dutch.

    Highlights include:

    • The ABCs of Marfan in six different languages
    • Research talks that address recent breakthroughs and hope for the future
    • Several specialized talks on each of the following: Marfan, VEDS, Loeys-Dietz, Stickler Syndrome, and Heritable Thoracic Aortic Conditions
    • A focus on treating and coping with pain, with presentations on pain management, building resiliency, physical therapy, and medical marijuana
    • Presentations on pregnancy, foot and ankle pain, eye issues, dental concerns, lung issues, and more
    • Talks on topics that can enhance quality of life, such as the healing power of laughter, art therapy, and mental fortitude
    • Presentations that address children’s medical issues related to Marfan, VEDS, and Loeys-Dietz, as well as how to deal with your child’s school, anti-bullying techniques, and preparing your child for surgery
    • Opportunities to connect with other people in the worldwide community through the Summit app

     

    See the full agenda here

    For the latest information on this event, visit the event page on the Marfan Foundation website here

  • Mon
    24
    Aug
    2020
    5:00PM-6:00PM (CET)Videoconference call - Webex

    The VASCERN HTAD-WG Monthly Meeting will take place on August 24th, 2020 at 5 pm (Paris time).

  • Wed
    19
    Aug
    2020
    3:45PM-5:00PM (CET)Videoconference call - Webex

    The VASCERN VASCA-WG Monthly Meeting will take place on August 19th, 2020 at 3:45 pm (Paris time).

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