• Mon
    16
    Dec
    2019
    8:00AM-9:00AM (CET)Videoconference call - Webex

    The VASCERN HHT WG monthly meeting #33 will take place on December 16th, 2019 at 8 am (Paris time).

  • Fri
    13
    Dec
    2019

    A preliminary announcement on the European Joint Programme on Rare Diseases (EJP RD) Joint Transnational Call (JTC) 2020 has just been released! The topic for this call is "Pre-clinical research to develop effective therapies for rare diseases"

    Research proposals must cover at least one of the following areas:

    1. Development of novel therapies in a preclinical setting (including small molecules, repurposing drugs, cell and gene advanced therapies) focusing on condition(s) with unmet medical needs
    2. Use of disease models suitable for medicinal product’s development according to EMA guidelines
    3. Development of predictive and pharmacodynamics (PD) biomarkers (with appropriate analytical methods e.g. OMICS) in a preclinical setting (e.g. in the validated model or in pre-collected human samples) for monitoring the efficiency of the therapy. The model chosen must mimic the human diseases and be transposable so that the biomarker identified in animals can be valid for humans
    4. Proof of principle studies fostering an early (pre-clinical) stage of drug development (excluding interventional clinical trials of phase 1-4).

    The maximum duration of the project is three years and the consortium submitting a proposal must involve 4-6 (up to 8, if inclusion of partners from underrepresented countries or Early Career Researchers) eligible principal investigator partners (no more than two from the same country).

    There will be a two-stage submission procedure for joint applications: pre-proposals and full proposals.

    The call is scheduled to open on: December 13, 2018.

    Pre-proposal submission deadline: 12th February 2020.

    For more information on this call, please click here

     

  • Tue
    10
    Dec
    2019
    10:00 amZoom

    The Monthly ePAG Meeting will take place on December 10th from 10am to 11:30am (CET time zone).

  • Mon
    09
    Dec
    2019
    1:00 pmwebex

    The VASCA Lymphangiography task force meeting will take place on December 9th at 1 pm (Paris time, UTC +1).

  • Wed
    04
    Dec
    2019
    6:00 pmwebex

    The MSA WG Monthly Meeting will take place on December 4th from 6 to 7pm (Paris time).

  • Fri
    29
    Nov
    2019
    London UK

    The course "challenges and choices in aortic valve and root surgery in younger patients" will take place at Glaziers Hall, London Bridge, London UK on November 11th, 2019.

    Dr. Yaso Emmanuel (HTAD-WG member) is one of the course organisers for this event.

    For more information, please click here

  • Wed
    27
    Nov
    2019
    10:00 amWebex

    The  webinar on the presentation of the repository of the ERNs document templates and taxonomy will take place on Wednesday 27 November 2019, 10h00-11h30 (GMT+1).

  • Tue
    26
    Nov
    2019
    Fri
    29
    Nov
    2019
    Maastricht, The Netherlands

    The EJP-RD is organising a Workshop and Hackathon: "Molecular pathways for rare disease (FAIR) data analysis" that will take place from November 26-29, 2019  at the University of Maastricht in The Netherlands.

    All information on this event and registration here

  • Mon
    25
    Nov
    2019
    5:00 pmwebex

    The HTAD WG Monthly meeting will take place on Monday, November 25th from 5 to 6 pm (Paris time).

  • Thu
    21
    Nov
    2019
    Fri
    22
    Nov
    2019
    Paris, France

    Paris Lymphology Days will take place from November 21-22nd, 2019 in Paris, France. It will be hosted by Dr. Stéphane Vignes (PPL WG Member) and will feature numerous presentations, including one  by VASCA WG Chair Prof Miikka Vikkula on the genetics of lymphedema, as well as practical workshops.

    To read the full program (in French) click here

    For more information (in French) click here

  • Wed
    20
    Nov
    2019
    3:45 pmWebex

    The VASCA Monthly meeting will take place on November 20th from 3:45pm to 5pm (Paris time).

  • Thu
    14
    Nov
    2019
    Fri
    15
    Nov
    2019
    10:00 amBrussels

    The 9th ERN Coordinators Group (ERN-CG) Meeting will take place in Brussels from the 4th of November 2019 from 10 am -5:30 pm and the 15th of November from 9am -1 pm.

    Prof Guillaume Jondeau, VASCERN coordinator, and Marine Hurard, VASCERN Project Manager, will be in attendance.

  • Wed
    13
    Nov
    2019
    Brussels, Belgium

    The Workshop of the ERN Research Working Group  with Research Infrastructures will take place in Brussels on November 13th, 2019.

    VASCERN's coordinator, Prof Guillaume Jondeau, will be in attendance at this event.

  • Tue
    12
    Nov
    2019
    10:00 amZoom

    The Monthly ePAG Meeting will take place on November 12th from 10am to 11:30am.

     

  • Thu
    07
    Nov
    2019
    Fri
    08
    Nov
    2019
    Brussels, Belgium

     

    VASCERN Days 2019 is quickly approaching! This year, our annual seminar will take place in Brussels, Belgium from Novembre 7th, starting at 8:30 am, to November 8th, finishing at 4:30pm at the Radisson Blu Royal Hotel.

    We look forward to welcoming around 100 participants to this event, including 65 HCPs representatives from 37 expert teams, 15 ePAGs from 15 Patient Organisations, 5 representatives from 4 of our newly appointed affiliated partners, and 11 stakeholders representing DG SANTE (European Commission),  Orphanet, FAVA-Multi (The French Network for Rare Vascular Diseases)EurordisEJP-RD, OpenApp, the French Ministry of Health, AP-HP Bichat Hospital and more!

    Read the full programme here

     

    The meeting will consist of several plenary sessions (including the annual board meeting) and two 4 to 5 hour long Rare Disease Working Group sessions as well as a dedicated VASCERN ePAG meeting. There will also be many opportunities for networking and sharing of ideas!

    This year we are also doing our part for the planet by going paperless! All event documents (programme, information kit etc), will be provided to members on one of our brand new VASCERN USB flash drives! The flash drives will equally contain other important VASCERN documents for our members.

    Please make sure to follow us on social media as we will be live tweeting throughout the two days with all the latest news and happenings using the hashtag #VASCERNDays2019! We encourage all our attendees to also participate!

  • Thu
    07
    Nov
    2019
    8:45 am to 4:30pmIstanbul, Turkey

    The European Joint Programme on Rare Disease Information Day & Brokerage Event will take place on November 7th from 8:45 am to 4:30pm in Istanbul, Turkey.

    See the programme here

  • Tue
    05
    Nov
    2019
    Wed
    06
    Nov
    2019
    Paris

    The RARE 2019 Meetings is the 6th edition of an event organised every two years to promote a health and research policy at the service of people with rare diseases.

     

    The RARE 2019 Meetings will be held on 5 & 6 November 2019 at the Cité des sciences et de l'industrie:

    City of Science and Industry
    30, avenue Corentin-Cariou
    75019 Paris

    Opening of the reception:

    Tuesday, November 5: 7:30 am - 6:30 pm

    Wednesday, November 6: 7:30 am - 5:30 pm

    For more information, click here.

  • Mon
    28
    Oct
    2019
    5:00 pmwebex

    The HTAD WG monthly meeting will take place from 5 to 6pm

  • Mon
    21
    Oct
    2019
    5:30 pmwebex

    The Pediatric & Primary Lymphoedema Working Group  Monthly Meeting (PPL Monthly Meeting) from 5:30 pm to 6.30 pm.

  • Fri
    18
    Oct
    2019
    2:00 pmwebex

    VASCA Lymphangiography task force

  • Wed
    16
    Oct
    2019
    3:45pm (UTC+1)webex

    VASCA-Working Group Monthly meeting from 3:45 pm to 5 pm

  • Tue
    15
    Oct
    2019
    4pm to 5:30pmwebex

    The Inter-ERN Working Group on Knowledge Generation will have their next meeting on October 15th, 2019 from 4-5:30pm.

  • Fri
    11
    Oct
    2019
    Sun
    13
    Oct
    2019
    Istanbul, Turkey

    The first Turkish lymphoedema congress will be held between 11 – 13 October 2019 in İstanbul, Turkey.

    The first two days there will be panels related with all aspects of lymphedema and the last day, workshops will be held on topics including; upper and lower extremity lymphedema, kinesiological bandaging in lymphedema, wound care and diagnostic ultrasound in lymphedema.

    The event has an international dimension with international participation.

    For more information, click here. 

  • Fri
    11
    Oct
    2019
    8:00 A.M(CET)webex

    The VASCERN HHT WG meeting will take place on Friday, October 11th at 8 am (Paris time).

  • Tue
    08
    Oct
    2019
    10:00 amZoom

    The VASCERN European Patient Advocacy Group (ePAG) Monthly meeting will take place from 10-11am.

  • Mon
    07
    Oct
    2019
    Tue
    08
    Oct
    2019
    Yarnfield, UK

    The British Lymphology Society (BLS) will hold their annual conference from October 7-8, 2019 in Yarnfield, UK. Pediatric and Primary Lymphedema (PPL) Working Group Members Prof. Vaughan Keeley and Prof. Kristiana Gordon will be speakers at this event.

    For more information on this event, click here

  • Mon
    07
    Oct
    2019
    Tue
    08
    Oct
    2019
    Tuusula, Finland

    The Nordic Society for Vascular Anomalies (NSVA) Meeting will take place from October 7th-8th, 2019 in Tuusula, Finland.

    Prof Miikka Vikkula, Chair of the Vascular Anomalies Working Group (VASCA WG) will be giving a presentation on VASCERN and the VASCA WG and other VASCA WG members will also be giving presentations at this event, including Prof. Päivi Salminen, Prof Laurence Boon, Dr. Nader Ghaffarpour and Dr Kristiina Kyrklund.

    For full programme, click here

  • Sat
    05
    Oct
    2019
    1:30 pmBrussels

    For its 20 year anniversary, the Association Belge du Syndrome de Marfan (ABSM) is hosting a gala on Saturday, the 5th of October 2019 at the Palais des Académies in collaboration with the Foundation 101 Génomes (F101G) and the endorsement of VASCERN. The gala will start at 1:30 pm.

    Professor Bart Loeys and Professor Julie de Backer will be speaking at this event respectively about:

    • the state of the art of the research initiated by the Foundation 101 Génomes: Genome-wide Epistasis for cardiovascular severity in Marfan Study
    • the long road to precision medicine for Marfan syndrome

    Our ePAG members Charissa Frank (MSA-WG) and Romain  Alderwereldt (HTAD-WG) will also be in attendance at this event.

    Prior to the gala, the scientific commitee of F101G will gather in the morning and members of our VASCERN HTAD working group will attend this meeting (Prof. Guillaume Jondeau, Prof Bart Loeys and Prof Julie de Backer).

    To read the full programme and to register for the gala click here.

  • Wed
    02
    Oct
    2019
    6:00 pmwebex

    MSA-WG Monthly Virtual Meeting will take place from 6-7 pm.

  • Mon
    30
    Sep
    2019
    Sat
    30
    Nov
    2019

    30 September - 30 November 2019

    The first call for new members to join existing 24 ERNs is open until 30 November 2019.

    To know more about it, check out our article.

     

  • Mon
    30
    Sep
    2019
    Brussels

    The conference will highlight the results of the current and previous EU Health Programmes and present the new approach in the future Multiannual Financial Framework for 2021-2027.

    For more information, click here

  • Mon
    30
    Sep
    2019
    8:00 amwebex

    HHT Working Group Monthly Meeting #30 from 8 am to 9 am (Paris time)

  • Mon
    23
    Sep
    2019
    Sun
    29
    Sep
    2019

    The European Biotech Week celebrates biotechnology, an innovative and vibrant sector launched by the discovery of the DNA molecule back in 1953. The first European Biotech Week that took place in 2013 marked the 60th anniversary of this pivotal moment in history.

    To have more information : click here

  • Mon
    23
    Sep
    2019
    Sat
    28
    Sep
    2019
    Buenos Aires, Argentina

    The International Society of Lymphology's (ISL's) 27th International Congress of Lymphology will take place from September 23-28, 2019 in Buenos Aires, Argentina.

    VASCERN members speaking at this event include Prof Miikka Vikkula and Prof Laurence Boon (VASCA-WG Chairs) and Prof Vaughan Keeley (PPL-WG member).

    To see the full programme click here

    For more information on this event, click here

     

  • Mon
    23
    Sep
    2019
    Fri
    27
    Sep
    2019
    Istituto Superiore di Sanità, Rome, Italy

    The International Summer School on Rare Disease Registries and FAIRification of Data is a part of a series of training activities proposed by the European Joint Programme on Rare Diseases (EJP RD).

    Professor Guillaume Jondeau and 2 members of the coordinating HCP APHP Bichat-Claude Bernard, will attend this event.

    For more informations : click here 

  • Mon
    23
    Sep
    2019
    17:00 - 18:00webex

    HTAD WG Monthly Meeting

  • Sat
    21
    Sep
    2019
    Sun
    22
    Sep
    2019
    Fort Lauderdale, Florida

    The Cure HHT Patient & Physician Conference will take place from September 21-22, 2019 at the Fort Lauderdale Marriott Pompano Beach Resort & Spa 1200 North Ocean Blvd. Pompano Beach, Florida 33062 USA.

    For more information, click here 

  • Thu
    19
    Sep
    2019
    Sun
    22
    Sep
    2019
    Drammen, Norway

    The 2019 Marfan Europe meeting will take place on 19-22 September 2019 in Drammen, Norway.

    More information here

  • Thu
    19
    Sep
    2019
    Worldwide

    September 19th is Aortic Awareness Day (AD-Day): a day dedicated to raising awareness for aortic diseases!  Aortic Disease Awareness events are planned and hosted by hospitals and organizations in many countries around the world.

    Within VASCERN, aortic diseases are covered by the Heritable Thoracic Aortic Diseases (HTAD) working group, which also includes diseases such as Marfan syndrome. Increasing awareness of these rare disorders is therefore essential in order to properly identify and diagnose these patients and provide them with the proper management and treatment plans.

    Members of VASCERN will be present at an event organised by Dr. Alessandro Pini, Dr. Roberto Chiesa and Dr. Germano Melissano at San Raffaele Hospital, in Milan, Italy. The video featuring our coordinator (and HTAD-WG Co-Chair), Prof. Guillaume Jondeau and Lise Murphy (ePAG Co-chair for HTAD) entitled how VASCERN: how can it help you? will be viewed along with a video intitled The role of patients in the ERNs. Paolo Federici, ePAG advocate for Hereditary Hemorrhagic Telangiectasia (HHT), will also give a presentation entitled EPAG: patients’ point of view. Many other interesting presentations are expected all day long. Take a look at the program here

    To register for this event, click here

    To learn more about the other events organised around the world, refer to the list of events.

    You can also follow all the latest news on AD Awareness Day 2019 at the Facebook page of Aortic Disease Awareness Day.

  • Wed
    18
    Sep
    2019
    15:45- 17:00webex

    VASCA Working group monthly meeting

    Webex from 3:45 pm to 5 pm

  • Tue
    17
    Sep
    2019
    Thu
    19
    Sep
    2019
    Gdansk, Poland

    The EJP RD General Assembly will take place from September 17-19, 2019 in Gdansk, Poland.

    Professor Guillaume Jondeau will attend this meeting to represent VASCERN.

  • Tue
    17
    Sep
    2019
    London, UK

    Genetic Alliance UK will hold a ERN UK conference on September 17th, 2019 in London, UK.

    VASCERN members Prof. Claire Shovlin (HHT-WG Chair; Hammersmith Hospital, Imperial College Healthcare) and Dr. Leema Roberts (MSA-WG Chair; Guy’s Hospital), who represent two of our 4 British Healthcare Providers (HCPs), will be in attendance. The other two HCPs are represented by Prof Vaughan Keeley (PPL-WG member; Derby Teaching Hospitals NHSF Trust) and Prof Sahar Mansour (PPL-WG Co-Chair;  St George’s University Hospitals).

  • Thu
    12
    Sep
    2019
    Fri
    13
    Sep
    2019
    London

    The Pediatric and Primary Lymphedema WG (PPL WG) face-to-face meeting will take place on September 12-13th, 2019 at St Georges Hospital in London.

    It will be led by PPL-WG Chair, Dr. Robert Damstra, and PPL-WG Co-chair, Prof Sahar Mansour. The first day will include presentations by ePAG Co-Chair and Deputy Co-Chair for PPL, Pernille Henriksen and Manuela Marques, as well as discussions on the various work packages that the group have underway. The second day will focus on patient case discussions amongst the healthcare professionals of the group.

    Members of PPL-WG will equally attend a dinner on the evening of September 12.

  • Thu
    12
    Sep
    2019
    10:00 amwebex

    The 2nd  WEBINAR on the review of the 18th monitoring indicators.

  • Tue
    10
    Sep
    2019
    10:00- 11:00Zoom

    VASCERN Monthly ePAG monthly meeting

  • Tue
    10
    Sep
    2019
    2:00 pmwebex

    VASCERN HTAD clinical outcome measures

  • Tue
    03
    Sep
    2019
  • Tue
    03
    Sep
    2019
    5:00 pmwebex

    VASCERN eHealth WG monthly virtual meeting

  • Sat
    31
    Aug
    2019
    Wed
    04
    Sep
    2019
    Paris, France

    The 2019 European Society of Cardiology (ESC) Congress will take place from the 31 August - 04 September 2019, in Paris, France.

    This events brings 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

    VASCERN members, both from the HTAD and MSA working groups will be in attendance at this event.

    Many VASCERN members will also be giving presentations, including HTAD-WG Chair Prof Julie De Backer, HTAD-WG Co-Chair Prof. Guillaume Jondeau and MSA-WG Co-Chair Dr. Michael Frank. The presentations will be available on the ESC website with the creation of an ESC account (which is free).

    To sign-up for an ESC account and access the presentations click here. You can then search by topic or by speaker for all the presentations!

    More informations : click here 

  • Fri
    30
    Aug
    2019
  • Mon
    26
    Aug
    2019
  • Sun
    25
    Aug
    2019
    Tue
    27
    Aug
    2019
    Krakow, Poland

    Registration free until 01.08.2019

  • Mon
    19
    Aug
    2019
  • Wed
    07
    Aug
    2019
  • 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.

  • Tue
    06
    Aug
    2019
  • Fri
    26
    Jul
    2019
  • Thu
    18
    Jul
    2019
  • Wed
    17
    Jul
    2019
  • Tue
    16
    Jul
    2019
    17.00-18.00WEBEX
  • 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
    04
    Jul
    2019
    1:00 pm

    When is it? Thursday, 4th July, 2PM CET

    Where is it? Join in from your laptop/desktop

    Who’s doing it? Presented by Con Hennessy, CEO, OpenApp

    Why should I be there? To get a better understanding of what an ERN population registry might look like.

    What’s it all about? An introduction to a JRC compatible ERN registry, how to collect data from multiple data sources, and how to engage patients and clinicians/HCPs. Full details below.

    To register and have more information, click here 

  • Wed
    03
    Jul
    2019
  • Tue
    02
    Jul
    2019
  • Mon
    01
    Jul
    2019
    London

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

  • Thu
    27
    Jun
    2019
    5:30 am

    Here is the agenda:

    1.- Update on the Taxonomy study
    2.- Update on the actions included in Health Programme ( Clinical guidelines, short stays of professionals)
    3.- State of play on training and education: new action 2020

  • Wed
    26
    Jun
    2019
    from 11am to 5pmLeiden

    One representative per ERN will participate in the focus group meeting of WP17 of EJP-RD. The meeting will take place on 26 June in Leiden

    The objective of this focus group meeting will be to develop the ERN research training program based on the EJP-RD ERN survey results

    The meeting participants will discuss details for the two main schemes – training workshops/seminars and fellow exchanges - that the ERN research training program will be made of. Topics to be discussed include topic prioritisation, participants/fellow selection and assessment.

  • Tue
    25
    Jun
    2019
  • Mon
    24
    Jun
    2019
    Brussels

    The 8th meeting of the European Reference Networks Coordinators Group (ERN-CG) will take place in Brussels Belgium on the 24th of  June 2019.

    Both VASCERN's coordinator, Prof. Guillaume Jondeau, and Project Manager, Marine Hurard, will be in attendance.

  • Mon
    24
    Jun
    2019
  • Wed
    19
    Jun
    2019
  • Wed
    19
    Jun
    2019
  • Mon
    17
    Jun
    2019
  • Mon
    17
    Jun
    2019
  • 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.

  • Tue
    11
    Jun
    2019
    10.00-11.00Videoconference calll
  • 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.

    Marine Hurard, VASCERN Project Manager, will give an update on the European Reference Networks (and VASCERN in particular) and Prof. Guillaume Jondeau, VASCERN coordinator, will give an update on the Clinical Patient Management System (CPMS).

    The VASCERN coordination team as well as other French VASCERN HCP and ePAG representatives will also be in attendance at this event.

    To consult the agenda of this event (in French), click here!

  • Wed
    05
    Jun
    2019
  • Tue
    04
    Jun
    2019
  • Mon
    03
    Jun
    2019
  • Wed
    29
    May
    2019
    18.00-19.00WEBEX
  • 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).

  • Mon
    27
    May
    2019
  • Fri
    24
    May
    2019
    11.00-12.30Videoconference call
  • Thu
    23
    May
    2019
  • Wed
    22
    May
    2019
  • Mon
    20
    May
    2019
  • Mon
    20
    May
    2019
  • 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)

    The Hospital Managers’ meeting will take place on 16 - 17 May 2019 in Hospital Saint-Louis, Paris, France. Professor Guillaume Jondeau, ERN Coordinator, will attend this meeting.

    Here is the final agenda :

    Thursday, 16 May 2019
    13:00 Welcome and opening
    13:15 – 13:45 Introduction: What benefits can a hospital managers expect from ERNs?
    13:45 – 14:45 1st Plenary session: Funding schemes and diagnostic related groups (DRGs) systems: feasibility
    in low prevalence conditions
    14:45 – 15:45 2nd Plenary session : The hospital of the future
    15:45 – 16:15 Pause
    16:15 - 18:30: Workshops: sharing best practices to help ERN
    17:30-18:30 3rd Plenary session: Presentation of the workshop + discussion
    19:00 End of the day: visit of the “Musée des Moulages” and networking dinner at the Musée des moulages

    Friday, 17 May 2019
    09:00 – 09:30 Welcome and opening
    10:00 – 12:30 4th Plenary session: ‘The ERNs environment and actors: Dialogue with the ERN managers’
    12:30 – 14:00 Lunch
    14:00 – 16:00 : 5th Plenary session: ‘Lessons taken and next steps’
    16:00 End of the day

  • 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
  • Tue
    14
    May
    2019
    10.00-12.00

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

  • 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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