• 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!

  • Thu
    19
    Sep
    2019
    Sun
    22
    Sep
    2019
  • Thu
    12
    Sep
    2019
    Fri
    13
    Sep
    2019
  • Sat
    31
    Aug
    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 

  • Tue
    06
    Aug
    2019
    Philadelphia
    The Penn Medicine Orphan Disease Center (ODC) will host the 6th Annual Million Dollar Bike Ride to raise money for rare disease research. Every donation made to Team LGDA / LMI will be matched by Penn Medicine ODC up to $30,000 and will be used to fund research into these rare diseases. Highline Park - 31st & Chestnut Philadelphia. PA 13/34/72 Mile Options

    For more informations click here or 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.

  • Mon
    01
    Jul
    2019
    London

    The Face to Face MSA-WG meeting will take place on July 1, 2019 in London, UK. It will be hosted by Dr. Leema Robert, Chair of the MSA-WG.

  • 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 

  • 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

  • Wed
    12
    Jun
    2019
    Sun
    16
    Jun
    2019
    PUERTO RICO

     Registration is now open for the 13th Annual International Scientific Conference!

     This June 12 - 16, in San Juan, Puerto Rico for invited speakers, cross-disciplinary sessions, abstract poster viewings, and more! Early Bird pricing is now live through April 30. Register here

    This biennial meeting is a must-attend for both established and early-stage researchers, clinicians experienced in treating HHT, those entering the field, and patients interested in learning more on the medical side.

  • 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. VASCERN will be presented at this event.

  • 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.

    This meeting is organized in Brussels ( Cliniques universitaires Saint Luc.) and hosted by Miikka Vikkula ( Chair of VASCA working-group).

  • Fri
    17
    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

  • Thu
    16
    May
    2019
    Fri
    17
    May
    2019
    Hospital Saint-Louis ( Paris)

    Professeur Jondeau will represent VASCERN at this meeting.

  • Wed
    15
    May
    2019
  • 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.

  • Tue
    14
    May
    2019
    10.00-12.00

    Marine Hurard, Project Manger will represent VASCERN at this online meeting.

  • Fri
    10
    May
    2019
    8.00-09.00Videoconference call - Webex
  • 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

  • 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 

  • Mon
    29
    Apr
    2019
    17.00-18.00Videoconference call - Webex
  • 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
    18
    Apr
    2019
    08.00-9.00 (Paris time) WEBEX
  • Wed
    17
    Apr
    2019
  • Tue
    16
    Apr
    2019
  • Mon
    15
    Apr
    2019
  • 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

  • Tue
    09
    Apr
    2019
  • Wed
    03
    Apr
    2019
  • Tue
    02
    Apr
    2019
    9:30AM-17:00PM (CET)Brussels, Belgium

    The Fifth meeting of the European Reference Networks IT Advisory Group will take place on April 2nd, 2019 in Brussels, Belgium. Prof. Guillaume Jondeau and Ibrahim Donmez will be present at this event.

  • Fri
    29
    Mar
    2019
  • Mon
    25
    Mar
    2019
    Brussels, Belgium

    The 7th ERN Coordinators Group Meeting will take place in Brussels, Belgium on March 25th, 2019. VASCERN Coordinator, Professor Guillaume Jondeau and VASCERN Project manager, Marine Hurard, will be in attendance at this event.

  • Mon
    25
    Mar
    2019
    17.00-18.00Videoconference call - Webex
  • Wed
    20
    Mar
    2019
  • Mon
    18
    Mar
    2019
    17.30-18.30Videoconference call - Webex
  • 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.

  • Thu
    14
    Mar
    2019

    North American Vascular Biology Organization (NAVBO) is highlighting HHT research in its webinar series with Stryder Meadows, Ph.D., Assistant Professor, Stepping Stone Foundation Early Career Professor in the Department of Cell and Molecular Biology at Tulane University presenting “Angiopoietin-2 inhibition rescues arteriovenous malformation in a SMAD4 HHT mouse model”.

    Dr. Meadows’ presentation will be related to 2 papers:

    1. Vascular Deficiency of Smad4 Causes Arteriovenous Malformations: a Mouse Model of Hereditary Hemorrhagic Telangiectasia. Angiogenesis, 2018 – https://www.ncbi.nlm.nih.gov/pubmed/29460088
    2. Angiopoietin-2 Inhibition Rescues Arteriovenous Malformation in a Smad4 Hereditary Hemorrhagic Telangiectasia Mouse Model. Circulation, accepted Jan 11, 2019

    For more informations, click here

  • Tue
    12
    Mar
    2019
  • Tue
    12
    Mar
    2019
    17.00-18.00Webex meeting

    VASCERN eHealth WG monthly virtual meeting
    The 1st Tuesday of every month, from Tuesday, October 3, 2017, to no end date

  • 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
    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.

    This meeting is organized in London and hosted by Claire Shovlin ( Chair of HHT working-group meeting ) in Hammersmith Hospital, Imperial College Healthcare NHS Trust.

  • Tue
    05
    Mar
    2019
    Brussels, Belgium

    Marine Hurard will be representing VASCERN for this meeting as VASCERN Project Manager.

  • 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

  • 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
    25
    Feb
    2019
    Brussels, Belgium

    Romain Alderweireldt (VASCERN Ethical and Legal WG Chair and member of  Heritable Thoracic Aortic Diseases working-group) will be representing VASCERN as Ethics WG Chair.

     

     

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

  • 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

  • Wed
    20
    Feb
    2019
    15.30-16.30Videoconference call - Webex
  • Wed
    20
    Feb
    2019
    5:30 pmVideoconference call - Webex
  • 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).

  • Fri
    15
    Feb
    2019
    12.30-13.30Videoconference call - Webex

    The ERN Research WG will have a videoconference meeting on February 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.

  • Fri
    15
    Feb
    2019
    12:30PM-13:30PM (CET)Videoconference call - Webex
  • Thu
    14
    Feb
    2019

    A preliminary announcement on the first Joint Call for Proposals of the European Joint Programme on Rare Diseases (EJP RD): "Transnational research projects to accelerate diagnosis and/or explore disease progression and mechanisms of rare diseases” has been released!

    The official call is scheduled to open on December 14, 2018, with the indicative deadline for submitting the pre-proposals being foreseen for February 14, 2019

    To read all about the upcoming call click here

    The ERA-Net E-Rare has successfully implemented ten Joint Transnational Calls for rare disease research projects since 2006. This effort is now continued in the frame of the European Joint Programme on Rare Diseases (EJP RD) that has been established to further help in coordinating the research efforts of European, Associated and non-European countries in the field of rare diseases and implement the objectives of the International Rare Disease Research Consortium (IRDiRC).

  • Wed
    13
    Feb
    2019
    Thu
    14
    Feb
    2019

    Exctract from the presentation of the sympoisum :

    EURORDIS-Rare Diseases Europe is organising the 3rd Multi-Stakeholder Symposium in February 2019 to build on the outcomes of the previous multi-stakeholder Symposia held in 2016 and 2017.
    We will use the collaborative multi-stakeholder approach in the position paper ‘Breaking the Access Deadlock to Leave No-one Behind’ written in January 2018 to develop and garner broad endorsement for a ‘roadmap’ document detailing a joint vision, offering solutions and stating commitments by all players in the rare disease community aimed at accelerating the development of effective therapies and guaranteeing timely and universal access to them, thereby progressively reducing existing gaps and inequalities.
    The timing of this initiative is of the upmost importance as the European Parliament elections will take place in May 2019 and the related changes in the European institutions, in particular at the European Commission, will subsequently take place. The ongoing discussion around the establishment of the Multiannual Financial Framework for the period 2021 – 2027 provides additional opportunities.
    Thus, it is essential for the rare disease community to have a clear and shared ‘roadmap’ that both highlights the critical need for a European vision and offers practical solutions that are implementable by the current and future European parliamentarians by 2025.

    For more information on this symposium : click here

    To see the full programme : click here 

  • Tue
    12
    Feb
    2019
    6:30 pmBrussels, Belgium

    The 8th edition of the EURORDIS Black Pearl Awards will take place on February 12th, 2019 at Le Plaza Hotel Brussels.

    The EURORDIS Black Pearl Awards is an annual awards ceremony which takes place in Brussels in February to launch the month of Rare Disease Day. Since 2012, EURORDIS-Rare Diseases Europe has organised this event to recognise the major achievements and outstanding commitment of patient advocates, patient organisations, policy makers, scientists, companies and media who strive to make a difference for the rare disease community.

    Programme:

    18.30 – 20.45 Welcome Address & Seated Dinner

    20.45 – 22.30 Awards Ceremony

    22.30 – 23.00 After dinner networking

    Prof. Guillaume Jondeau, coordinator of VASCERN, will attend this event as a member of the Black Pearl Committee.

    For more information : click here 

  • Wed
    06
    Feb
    2019
    18.00-19.00Videoconference call - Webex
  • Fri
    01
    Feb
    2019
    8.00-09.00Videoconference call - Webex
  • Thu
    31
    Jan
    2019
    Sun
    03
    Feb
    2019
    ROMA
  • Wed
    30
    Jan
    2019
    Madrid, Spain

    The FEDER (The Spanish Rare Diseases Organisation) meeting on European Reference Networks entitled "ERNs: an integral challenge", will take place on Wednesday January 30th, 2019 in Madrid, Spain. Two VASCERN ePAG members will be speakers at this event: Ms. Elena de Moya (for HTAD) and Dr. Luisa Botella (for HHT).

    Ines Hernando, ERN and Healthcare Director from Eurordis will also be in attendance.

    To learn more about this event, click here

    To read the full program (in Spanish) click here

  • Mon
    28
    Jan
    2019
    17:00PM-18:00PM (CET)Videoconference call - Webex
  • Mon
    28
    Jan
    2019
    8:00AM-9:00AM (CET)Videoconference call - Webex
  • Thu
    24
    Jan
    2019
    Sat
    26
    Jan
    2019
    Turin, Italy

    The 22nd Congress on Immune Pathology and Orphan Diseases will take place in Turin, Italy from January 24-26, 2019. Professor Guillaume Jondeau, VASCERN Coordinator, will give a presentation of VASCERN at this event.

    To read the full program (in Italian) click here

     

  • Tue
    22
    Jan
    2019
    17:00PM-18:00PM (CET)Videoconference call - Webex
  • Mon
    21
    Jan
    2019
    17:30PM-18:30PM (CET)Videoconference call - Webex
  • Wed
    16
    Jan
    2019
    16:00PM-17:00PM (CET)Videoconference call - Webex
  • Fri
    11
    Jan
    2019
    12:30PM-13:30PM (CET)Videoconference call - Webex
  • Wed
    09
    Jan
    2019
    17:00PM-18:00PM (CET)Videoconference call - Webex

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