• Fri
    28
    Jan
    2022
    8.00AM-9.00AMWEBEX

    The VASCERN HHT-WG Monthly Meeting will take place on January 28th 2022 at 8.00 AM (Paris time).

  • Tue
    01
    Feb
    2022
    6:00PM-7:00PM (CET)Zoom Webinar

    VASCERN will hold a webinar on Tuesday February 1st, 2022 from 6-7 PM (CET) entitled: Diagnostic and Management Pathway for Capillary Malformations with Dr. Eulalia BASELGA TORRES, Pediatric Dermatologist from Hospital Sant Joan De Déu, Barcelona, Spain.

    This will be the the fourth and final 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
  • Tue
    08
    Feb
    2022
    10.00AM-11.30AMZOOM

    The VASCERN ePAG Monthly Meeting will be taking place on February 8th, 2022 from 10 am to 11:30 am (Paris time).

  • Tue
    08
    Feb
    2022
    6:00PM-7:30PM (CET)Online

    The eleventh edition of the Black Pearl Awards will take place online on Tuesday, February 8th, 2022 from 18:00 until 19:30 CET and will bring together persons living with a rare disease, patient advocates, policy makers, scientists, healthcare professionals, industry representatives, and more.

    Registration for the Online Ceremony is now open! Register for free here

    More information on the event page here

  • 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 

  • Thu
    10
    Feb
    2022
    5.30PM-6.30PMWEBEX

    The VASCERN NEUROVASC-WG Monthly Meeting will take place on February 10th, 2022 at 5.30 pm (Paris time)

  • Mon
    14
    Feb
    2022
    5.00PM-6.00PMWEBEX

    The VASCERN MSA-WG Monthly Meeting will be taking place on February 14th, 2022 at 5 pm (Paris time).

  • Wed
    16
    Feb
    2022
    The European Joint Programme on Rare Diseases announced on December 14th 2021 the official launch of the Joint Transnational Call 2022, a funding opportunity for research projects on the development of new analytic tools and pathways to accelerate diagnosis and facilitate diagnostic monitoring of rare diseases.
    The aim of the funding opportunity is to enable scientists in different countries to build an effective collaboration on a common interdisciplinary research project based on complementarities and sharing of expertise, with expected impact to use the results in the future for benefit of patients
     
    TopicDevelopment of new analytic tools and pathways to accelerate diagnosis and facilitate diagnostic monitoring of rare diseases
    16 February: Pre-proposal submission deadline
  • Wed
    16
    Feb
    2022
    4.00PM-5.00PMWEBEX

    The VASCERN VASCA-WG Monthly Meeting will take place on February 16 th , 2022 at 4:00 pm (Paris time)

  • Mon
    21
    Feb
    2022
    5.30PM-6.30PM

    The VASCERN PPL-WG Monthly Meeting will take place on February 21st, 2021 at 5:30 pm (Paris time).

  • Fri
    25
    Feb
    2022
    8.00AM-9.00AMWEBEX

    The VASCERN HHT-WG Monthly Meeting will take place on February 25th 2022 at 8.00 AM (Paris time).

  • Mon
    28
    Feb
    2022

    VASCERN will participate in the the international rare disease day on the 28th February.

    Upcoming information soon...

  • Mon
    28
    Feb
    2022
    5.00PM-6.30PMWEBEX

    The VASCERN HTAD-WG Monthly Meeting will take place on February 28th, 2022 at 5.00 pm (Paris time).

  • Tue
    01
    Mar
    2022

    The 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 preliminary dates in 2022.

    • March 1, 2022 at 14.00 (CEST)
    • September 1, 2022 at 14.00 (CEST)
    • December 1, 2022 at 14.00 (CET)

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

  • 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/

  • Thu
    31
    Mar
    2022
    Fri
    01
    Apr
    2022
    Centre Hospitalier Universitaire de Rennes in Rennes, France

     

    In the context of EJP RD’s ERN Workshops, an in-person workshop titled "Trans-ERN Working Group for Spina Bifida (Spinal Dysraphism): Workshop for future research on innovative diagnostics and interdisciplinary treatment" aimed at sharing participants' expertise on research in different areas of spinal dysraphism and opening the way to new research projects is being organised by Centre de Référence Spina Bifida – Dysraphismes C-MAVEM, Centre Hospitalier Universitaire de Rennes.

    The face-to-face event (in-person on site) will take place over two days on March 31st – April 1st, 2022 at the Centre Hospitalier Universitaire de Rennes in Rennes, France.

    The workshop is open by prior registration and selection to geneticists, fetal medicine experts, neurosurgeons, rehabilitation medicine specialists, pediatric and adult urologists, pediatricians who are employees of or affiliated to an ERN-Full Member or affiliated Partner institution. 

    The training workshop is free of charge. The workshop will consist of interactive presentations and discussions on different areas of interest.

    Registration closes on January 28th, 2022 and those selected to participate from among the applicants will be informed by February 15th, 2022 of their selection.

    More information and registration here: https://www.ejprarediseases.org/event/trans-ern-working-group-for-spina-bifida-spinal-dysraphism-workshop-for-future-research-on-innovative-diagnostics-and-interdisciplinary-treatment/

     

  • 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

  • Mon
    27
    Jun
    2022
    Fri
    01
    Jul
    2022
    Online Meeting

     

    The ECRD is recognised globally as the largest, patient-led rare disease policy event in which collaborative dialogue, learning and conversation takes place, forming the groundwork to shape goal-driven rare disease policies and allow for important and innovative discussions on a national and an international level to take place.

    Leading, inspiring and engaging all stakeholders to take action, the Conference is an unrivalled opportunity to network and exchange invaluable knowledge with over 1500 stakeholders in the rare disease community – patient advocates, policy makers, researchers, clinicians, healthcare professionals, healthcare industry representatives, academics, payers, regulators and Member State representatives.

    The next ECRD will take place fully online from 27 June to 1 July 2022.

    This 11th edition follows a pivotal two-year Rare 2030 Foresight Study, supported by the European Parliament and European Commission, that guided a large-scale and multi-stakeholder reflection on rare disease policy in Europe through 2030.

    The concluding recommendation of Rare2030 was the need for a new European policy framework on rare diseases with measurable and actionable goals. Current actions at Member State level alone, or legislative changes in specific areas are not enough. We need a new European collective strategy for rare diseases to bring Member States’ commitment to rare diseases under a common umbrella and mark a step forward in the post-COVID world.

    This ECRD will be a critical opportunity for all stakeholders to consider how to transform this exhaustive review of the strategy on rare diseases into a proposal of concrete actions ultimately creating the ecosystem required to address the unmet needs and persisting inequalities across Europe.

    Patient advocates fee-waiver applications

    EURORDIS-Rare Diseases Europe is offering patient fee waivers for up to 80 patients’ advocates to attend the next ECRD online. These fee waivers aim at empowering patient advocates by offering a platform for networking opportunities, access to information and sharing experiences.

    Application deadline: 31 January 2022

    Recipients will be selected based on their advocacy skills and objectives, by an ad hoc committee and notified by end of February.

    More information on: https://www.rare-diseases.eu/

     

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