• Mon
    18
    Feb
    2019
    Brussels, Belgium

    The ERN WG on Knowledge Generation/Working subgroup on Training and Education will hold a face-to-face workshop on February 18th, 2019, in Brussels, Belgium. VASCERN will be represented at this event by Raffaella Gaetano (Centro Malattie Rare Cardilogiche – Marfan Clinic Azienda Socio Sanitaria Territoriale Fatebenefratelli – Sacco, Milan, Italy).

  • Mon
    18
    Feb
    2019
    17.30-18.30Videoconference call - Webex
  • Wed
    20
    Feb
    2019
    15.30-16.30Videoconference call - Webex
  • Wed
    20
    Feb
    2019
    5:30 pmVideoconference call - Webex
  • Thu
    21
    Feb
    2019
    United Nations Headquarters, New York

    The Rare Disease Day Policy Event at the United Nations will take place on February 21, 2019 at the United Nations headquarters in New York.

    The event aims to present a number of activities carried out through 2017 and 2018 within the human rights, health and sustainable development agendas of the United Nations system as well as present and discuss a call towards a General Assembly Resolution on rare diseases. It will take the form of an all-day conference bringing together around 100 participants – from the international NGO community, UN agencies and national governments, academic and research institutions as well as the private sector – interested in collaborating towards the advancement of rare diseases as a global public health priority.

    For more information on this event, click here

  • Thu
    21
    Feb
    2019
    Fri
    22
    Feb
    2019
    Leuven, Belgium

    The Pediatric and Primary lymphedema Working Group (PPL-WG) will have its face-to-face meeting in Leuven, Belgium from February 21-22nd, 2018.

    This two-day meeting will be organised and hosted by Dr. Sarah Thomis, HCP Representative from the University Hospitals Leuven.

    It will be the PPL-WG's second face-to-face meeting, after VASCERN Days 2018, for this second year of activity.

    For a reminder, the other 4 Rare Disease Working Groups (HHT, HTAD, MSA and VASCA) all held their individual face-to-face meetings in May of this year.

  • Mon
    25
    Feb
    2019
  • Mon
    25
    Feb
    2019
    17h-18hVideoconference call - Webex
  • Thu
    28
    Feb
    2019

    Rare Disease Day 2019 will take place on February 28th, 2019!

    The theme for this year's event will be Bridging health and social care. Read all about the importance of this theme to the rare disease community here

    Rare Disease Day takes place on the last day of February each year and aims to raise awareness for rare diseases amongst the general public, healthcare professionals and decision-makers in order to address the needs of those living with rare diseases.

    The VASCERN Coordination team will attend an event in Paris organised by The French Reference Networks on Rare Diseases along with the French network for rare vascular diseases (FAVA-Multi)

  • Mon
    04
    Mar
    2019
    Tue
    05
    Mar
    2019
    Vienna, Austria

    The 2nd International Congress on Advanced Treatments in Rare Diseases (RARE2019) will be held in Vienna, Austria from March 4-5th, 2019. This congress will address the challenges of Rare Diseases Treatments as well as the new therapies in development.

    To see the prelimanary program click here

    For all further information click here

  • Fri
    08
    Mar
    2019
    London, UK

    VASCERN's Hereditary Haemorrhagic Telangiectasia Working Group (HHT-WG) will have a face-to-face meeting in London, UK on March 8th, 2019.

  • Mon
    11
    Mar
    2019
    Fri
    15
    Mar
    2019
    Paris, France

    The next face-to-face training of the EURORDIS Winter School will take place 11-15 March 2019 at the Imagine Institute in Paris, France.

    For more information, click here

  • Fri
    15
    Mar
    2019
    12:30PM-13:30PM (CET)Videoconference call - Webex

    The ERN Research WG will their monthly videoconference meeting on March 15th, 2019.

    Prof. Miikka Vikkula, chair of the VASCA WG  or Prof. Claire Shovlin, chair of the HHT WG, will represent VASCERN in this interERN group.

  • Mon
    25
    Mar
    2019
    Brussels, Belgium

    The 7th ERN Coordinators Group Meeting will take place in Brussels, Belgium on March 23rd, 2019. VASCERN Coordinator, Professor Guillaume Jondeau and VASCERN Project manager, Marine Hurard, will be in attendance at this event.

  • Wed
    10
    Apr
    2019
    Sun
    12
    May
    2019
    Gaylord National Harbor Hotel, Oxon Hill, Maryland USA

    The World Orphan Drug Congress USA focuses on the most pressing challenges and opportunities to bring rare disease therapies to patients faster.
    Bringing together a global gathering of 1,200 leaders in orphan drugs from 50 countries, the World Orphan Drug Congress USA will feature over 135 presentations covering all aspects of orphan drug development and rare disease research.

    For more information about this event, click here

  • Sat
    27
    Apr
    2019
    Tue
    30
    Apr
    2019
     Antwerp, Belgium

    The fourth cardiogenetics training course supported by the European Society of Human Genetics will take place from Saturday April 27th to Tuesday April 30th 2019.

    The course venue alternates between Manchester and Antwerp and this year the course is organized again in Antwerp (course organizers: Prof Bill Newman, Manchester Centre for Genomic Medicine; Prof Bart Loeys, Clinical Genetics, University of Antwerp; prof Johan Saenen, cardiology, University of Antwerp)

    The course is mainly intended for young trainees in genetics and cardiology and consists of lectures, interactive and case-based teaching covering clinical and molecular aspects of cardiogenetic disorders.

    Prof. Bart Loeys, member of  the VASCERN HTAD-WG will give several presentations at this event, including one on aortopathies.

    For the course program, all other practical information and to register for the course please visit the training course website: http://ngs.uantwerpen.be/cargen2019/

  • Thu
    02
    May
    2019
    Fri
    03
    May
    2019
    Rotterdam, the Netherlands

    The International Consortium for Health Outcomes Measurement (ICHOM) Conference 2019 will take place from May 2-3rd, 2019 in Rotterdam, The Netherlands.

    The conference will feature keynotes and discussion panels, as well as three breakout tracks (Clinical Care, Data and Innovation, and Strategy), comprising of three sessions each.

    For more information: click here 

  • Wed
    08
    May
    2019
    Sat
    11
    May
    2019
    Toronto, Canada

    The RE(ACT) CONGRESS, the International Congress on Research of Rare and Orphan Diseases, will take place in Toronto, Canada from May 8-11, 2019.

    All information can be found here

  • Tue
    14
    May
    2019
    Amsterdam, The Netherlands

    VASCERN's Heritable Thoracic Aortic Diseases Working Group (HTAD-WG) will have a face-to-face meeting in Amsterdam, The Netherlands on May, 14th, 2019.

  • Thu
    16
    May
    2019
    Sat
    18
    May
    2019
    Bucarest, Romania

    The next full EURORDIS Membership Meeting (EMM) will take place on 17 - 18 May 2019 in Bucharest. Details on how to register will be made available on this page shortly.

    EURORDIS is offering patient fellowships for up to 40 patient advocates to attend the EURORDIS Membership Meeting 2019 Bucharest.

    These fellowships aim to empower patient advocates by offering a platform for networking opportunities, access to information and sharing experiences. The programme covers:

    • Registration (fee waiver)
    • Travel (return trip economy fare flight or train)
    • Accommodation

    The total of the travel and hotel expenses reimbursed by EURORDIS cannot exceed 400€ per fellow.

    To apply for a fellowship

    Patient representatives wishing to benefit from this fellowship programme are invited to fill out and return the Patient Fellowship Programme Application Form.

    Deadline: 28 February 2019

    Selection of fellowship beneficiaries

    Fellows will be selected based on their advocacy skills and objectives, by an ad-hoc committee and notified by 15 March 2019.

    The selection criteria are defined in the Patient fellowship Evaluation Scale.

    For more information, please contact: anja.helm@eurordis.org

    For more informations about this event, click here

  • Mon
    27
    May
    2019
    Tue
    28
    May
    2019
    Brussels, Belgium

    VASCERN's  Vascular Anomalies Working Group (VASCA-WG) will hold a face-to-face meeting from May 27-28th, 2019 in Brussels, Belgium.

     

  • Fri
    31
    May
    2019
    Wed
    04
    Sep
    2019
    Paris, France

    Bringing the world of cardiology together :

    • 32,000 healthcare professionals
    • From 150 countries
    • 4,500 abstracts presented
    • 500 experts sessions
    • 400 cardiology topics
    • 200 exhibiting companies
    • 5 days of scientific sessions

    More informations : click here 

  • Fri
    07
    Jun
    2019
    Paris, France

    The French network on rare multisystemic vascular diseases (FAVA-Multi) will hold their annual meeting on June 7th, 2019 in Paris, France.

  • Thu
    13
    Jun
    2019
    Sat
    15
    Jun
    2019
    Chicago, USA

    The 9th International Conference of the International Lymphoedema Framework (ILF) will take place from June 13-15th, 2019 in Chicago, USA.

    VASCERN PPL-WG member, Dr Kristiana Gordon, is already a confirmed to speak at this event.

    For more information, click here

  • Sat
    15
    Jun
    2019
    Tue
    18
    Jun
    2019
    Gothenburg, Sweden

    The European Human Genetics Conference hosted by The European Society of Human Genetics (ESHG) will take place from June 15-18, 2019 in Gothenburg, Sweden.

    Prof Bart Loeys, member of the HTAD-WG and MSA-WG, is a confirmed speaker at this event.

    To see the list of speakers : click here 

    For the programme of the event : click here 

  • Wed
    10
    Jul
    2019
    Fri
    12
    Jul
    2019
    Warth (Canton Thurgau), Switzerland

    The 7th Rare Diseases Summer School will take place in the Kartause Ittingen, Warth (Canton Thurgau), Switzerland, from July 10th to July 12th 2019.  This summer school (aimed mainly for clinicians, physician-scientists, postdocs, and PhD students) is organised by radiz - Rare Disease Initiative Zürich of the University of Zurich.

    A wide variety of subjects in the arena of rare diseases will be covered. There will be lectures given by national and international rare disease experts, workshops and poster presentations by participants. Subjects include drug development, model organisms, how to choose clinical endpoints, clinical trials, regulatory aspects, patient registries, patient initiated research, ethical considerations, as well as what rare diseases may tell us about common diseases.

    Up to 30 participants will be admitted, so space is limited. Participants are expected to bring a poster about their work or research interests related to rare diseases.

    Find the full programme here.

    For all further information, including the application procedure, click here.

    Application deadline is April 2nd 2019.

  • Thu
    19
    Sep
    2019
    Sun
    22
    Sep
    2019
  • Thu
    07
    Nov
    2019
    Fri
    08
    Nov
    2019
    TBA

    VASCERN's annual seminar, VASCERN Days 2019, will take place from Novembre 7-8, 2019. Location and further details to be announced!

  • Tue
    12
    May
    2020
    Fri
    15
    May
    2020
    Vancouver, Canada

    The International Society for the Study of Vascular Anomalies (ISSVA) will host ISSVA 2020, the 23rd  Workshop for the Study of Vascular Anomalies,  in the beautiful city of Vancouver, in British Columbia, Canada from May 12-15, 2020.  Vancouver is great site for this Workshop!  It is a city that unites an urban metropolis with the sea and mountains.  It will also be the first time since 2008 that the Workshop will be held in North America.

    The Scientific Program will be a venue to present the latest advances in research and science in vascular anomalies.  It will also feature introductory and advanced sessions that attendees can use to increase their knowledge in the fundamentals and advanced topics in the field.  ISSVA 2020 will provide a multidisciplinary forum for many specialties including – but not limited to - interventional radiologists, dermatologists, plastic surgeons, ENT surgeons, oncologists, pediatricians, pediatric surgeons, and pathologists.

    The ISSVA Workshop has continuously grown thanks to your dedication to the field and participation in the meeting. We invite you to participate in ISSVA 2020 to help us continue this trend of knowledge sharing through oral presentations, difficult cases, and poster sessions.

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