• Thu
    09
    Dec
    2021
    4.00PM-5.00PMZOOM Meeting
    EJP RD is co-organising a meeting, along with the European Rare Disease Research Coordination and Support Action consortium (ERICA) and the Joint Research Centre (JRC), on Domain specific Common Data Elements (DCDEs) Curation targeted towards clinicians and people with a medical background to join.
    The online meeting will take place on December 9th, 2021 from 16.00 – 17.00 CET.
    In this meeting, the organisers will begin to curate the list of Domain specific Common Data Elements (DCDEs) compiled by the EJP RD FAIRification stewards from the data dictionaries provided by the ERN registries. The aim of the DCDEs is to be able to share domain specific data between ERNs, data that is not currently covered by the Common Data Elements (CDEs).
  • Mon
    13
    Dec
    2021
    5.00PM-6.00PMwebex

    The VASCERN MSA-WG Monthly Meeting will be taking place on December 13th, 2021 at 5 pm (Paris time).

  • Tue
    14
    Dec
    2021
    10.00AM-11.30AMZOOM WEBINAR

    The VASCERN ePAG Monthly Meeting will take place on December 14th, 2021 from 10 am to 11:30 am (Paris time).

  • Tue
    14
    Dec
    2021
    5:00 pmWEBINAR

    Save the date!

    ERN RARE-LIVER is organising a Webinar on the 14th of December on the topic of vaccinations in rare disease patients entitled:

    "ERN RARE-LIVER: Update on SARS-COV-2 vaccinations for rare disease patients."

    Especially pleased to welcome panelists from two other networks, Transpland Child and RITA.

    Registration link: 
     
     
    Panelists and details: 
     
     
  • Wed
    15
    Dec
    2021
    5:00PM-6:00PMZoom

    VASCERN will hold a webinar on Wednesday December 15th, 2021 from 5pm to 6pm (CET) entitled: Diagnostic and Management Pathway for Lymphatic Malformations with Dr. Nader GHAFFARPOUR, Pediatric surgeon from Karolinska University Hospital in Stockholm, Sweden.

    This will be the the second of a series of four webinars exploring the Patient (Diagnostic and Management) Pathways created by the Vascular Anomalies Working Group (VASCA WG).

    This webinar, that will consist of a scientific presentation followed by a question and answer session, will be primarily directed towards physicians who would like to learn more about these pathways in order to improve their knowledge on these rare vascular anomalies – but all interested participants are welcome to attend!

    Register here
  • Mon
    20
    Dec
    2021
    5.30PM-6.30PMWEBEX

    The VASCERN PPL-WG Monthly Meeting will take place on December 20th, 2021 at 5:30 pm (Paris time).

  • Thu
    23
    Dec
    2021
    8.00AM-9.00AMWEBEX

    The VASCERN HHT-WG Monthly Meeting will take place on December 23rd  2021 at 8 am (Paris time).

  • Tue
    11
    Jan
    2022
    10.00AM-11.30AMZOOM WEBINAR

    The VASCERN ePAG Monthly Meeting will take place on  January 11th, 2022 from 10 am to 11:30 am (Paris time).

  • Mon
    17
    Jan
    2022
    5.30PM-6.30PMwebex

    The VASCERN PPL-WG Monthly Meeting will take place on January 17th, 2022 at 5:30 pm (Paris time).

  • Wed
    19
    Jan
    2022
    4.00PM-5.00PMwebex

    The VASCERN VASCA-WG Monthly Meeting will take place on January 19 th , 2022 at 4:00 pm (Paris time)

  • Sat
    22
    Jan
    2022
    8:30AM-17:00PMOnline

    Save the date: The Marfan Foundation's Spanish Marfan, Loeys-Dietz and VEDS summit (CUMBRE DE LA FUNDACIÓN MARFAN: Información educativa sobre Marfan, Loeys-Dietz, VEDS y condiciones relacionadas para pacientes y familias) will take place online on Saturday, January 22nd, 2022 from 8:30AM-5PM.

    VASCERN is proud to be Community Partner of this event. Dr. Arturo EVANGELISTA, Heritable Thoracic Aortic Disease (HTAD WG) Affiliated Partner member, from Hospital Universitari Vall d'Hebron in Barcelona Spain will be one of the presenters at this event, which will be entirely in Spanish.

    See the save the date flyer in Spanish here

    Registration details to follow soon!

     

  • Mon
    24
    Jan
    2022
    5pm-6.30-pmwebex

    The VASCERN HTAD-WG Monthly Meeting will take place on January 24th, 2022 at 5 pm (Paris time).

  • Thu
    10
    Feb
    2022
    Fri
    11
    Feb
    2022
    Online

     

    On 10-11 February 2022, ERN GENTURIS, the European Reference Network on Genetic Tumour Risk Syndromes, will celebrate its 5-year anniversary with a free online conference.

    The conference will feature updates on the ERN GENTURIS tumour predisposition syndromes, reports on special ERN GENTURIS projects and patient perspectives. It will also include a half-day introductory educational session specially aimed at general practitioners.

    You can register for the conference via:     genturis2022.eu.

    Programme here: ERN_GENTURIS_conference_2022_programme 

  • Fri
    04
    Mar
    2022
    Sat
    05
    Mar
    2022
    11:30 am University Hospital Nice, Pasteur 2 Hospital – Galet, Nice, France (hybrid event: on site and by videoconference)

    In the context of EJP RD’s ERN Workshops, a hybrid workshop on “contemporary outcome measures in neuromuscular diseases aimed at understanding the advancement of technologies with digital outcome measures in neuromuscular diseases is being organised by Prof. Sabrina Sacconi of University Hospital Nice.The hybrid event (in-person on site and online by videoconference) will take place over two days on:

    March 4th – 5th, 2022 at the University Hospital Nice, Pasteur 2 Hospital in Galet, Nice, France.The workshop is open by prior registration and selection to different target groups, especially those who want to deepen their knowledge in clinical outcomes measures and innovative digital outcomes, consisting of researchers and clinicians affiliated to an ERN Full Member or Affiliated Partner Institution, physiotherapists and students.
    The training workshop is free of charge. The workshop will consist of both presentations by experts in the field of neuromuscular diseases as well as interactive panel discussions and quiz sessions to train participants in performing and interpreting various outcome measures.
    Registration closes on January 10th, 2022 and those selected to participate from among the applicants will be informed by January 14th, 2022 of their selection.


    More information and registration here: 
    https://www.ejprarediseases.org/event/contemporary-outcome-measures-in-neuromuscular-diseases/

  • Sun
    24
    Apr
    2022
    Paris, France

    Save the Date: THE MARFAN FOUNDATION's What’s New in Genetic Aortic and Vascular Conditions - An international educational meeting for affected people and their families will take place Sunday April 24th, 2022 in Paris, France!

    Many VASCERN members will be presenting at this event including VASCERN Coordinator and Heritable Thoracic Aortic Disease (HTAD WG) Co-Chair, Professor Gullaume Jondeau, HTAD WG Chair, Professor Julie De Backer, and Professor Bart Loeys (HTAD and MSA WG member).

    More information here

    Registration coming in 2022!

  • Wed
    04
    May
    2022
    Gliwice, Poland

    In the context of EJP RD’s ERN Workshops, a face-to-face workshop on “Endocrine cancer: A challenge in adults and children” aimed at giving an update on the molecular background and clinical management of rare endocrine malignancies is being organised by Prof. Barbara Jarzab of the M. Sklodowska-Curie National Research Institute.

    The in-person event will take place on May 4th, 2022 at the M. Sklodowska-Curie National Research Institute in Gliwice, Poland.

    The workshop is open by prior registration and selection to endocrinologists, oncologists, surgeons, radiotherapists, internists and pediatricians, pathologists, radiologists, nuclear medicine specialists who are employees of affiliated to an ERN Full Member or affiliated Partner institution
    The training workshop is free of charge.  Travel and hotel expenses will be reimbursed for all selected (max 20) ERN participants. Lunch and dinner will be provided on site for all participants.

    Registration closes on January 28th, 2022 and those selected to participate from among the applicants will be informed by February 28th, 2022 of their selection.

    More information and registration here: https://www.ejprarediseases.org/event/endocrine-cancer-a-challenge-in-adults-and-children/

  • Tue
    10
    May
    2022
    Fri
    13
    May
    2022
    Vancouver, B.C.

    The International Society for the Study of Vascular Anomalies (ISSVA) will be hosting the ISSVA World Congress 2022 (formerly the Workshop) from May 10-13th 2022 in Vancouver, Canada.

    The ISSVA World Congress 2022 will provide the opportunity to learn through a multi-disciplinary approach and will be attended by a wide array of specialists such as intervention radiologists, dermatologists, plastic surgeons, ENT surgeons, pediatricians, pediatric surgeons, oncologists, pathologists... and more! As usual, many members of the Vascular Anomalies (VASCA) WG will be in attendance at this international event.

    More information here

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