• Thu
    26
    Nov
    2020
    Fri
    27
    Nov
    2020
    Brussels, Belgium

    Marine Hurard and Professor Jondeau will be attending the ERN Coordinators Group Meeting that will take place on November 11th, 2020 in Brussels, Belgium.

     

  • Sat
    29
    Aug
    2020
    Wed
    02
    Sep
    2020
    Amsterdam, The Netherlands

    The European Society of Cardiology (ESC) Congress 2020 will take place in Amsterdam, The Netherlands from August 29th- September 2nd, 2020.

    For more information visit the event's website here

  • Wed
    15
    Jul
    2020
    Fri
    17
    Jul
    2020
    Kartause Ittingen, Warth

    The 8th Rare Diseases Summer School organized by radiz – Rare Disease Initiative Zurich, which will take place in the Kartause Ittingen, Warth (Canton Thurgau; close to Zurich) from July 15th to July 17th 2020.

    The Summer School will contain lectures by national and international rare disease experts, workshops, and poster presentations by participants.
    A high faculty-to-student ratio will allow participants to optimally benefit from the varied expertise of the faculty.

    For more information, go to their website.

  • Mon
    29
    Jun
    2020
    Tue
    30
    Jun
    2020
    Brussels, Belgium

    Prof. Jondeau and Marine Hurard will be attending the ERN Coordinator's Group meeting on June 29th, 2020 in Brussels, Belgium.

     

  • Wed
    24
    Jun
    2020
    Thu
    25
    Jun
    2020
    Paris, France

    The Medium-Sized Arteries Working Group (MSA-WG)'s face-to-face meeting will take place from June 24-25th, 2020 at the HEGP Hôpital Européen Georges Pompidou in Paris, France.

     

  • Thu
    11
    Jun
    2020
    Fri
    12
    Jun
    2020
    Lyon, France

    The HHT face-to-face meeting will take place from June 11th to 12th, 2020 at Hôpital Louis Pradel  - Hospices Civils de Lyon, in Lyon, France.

  • Thu
    04
    Jun
    2020
    Fri
    05
    Jun
    2020
    Helsinki, Finland

    The PPL WG face-to-face meeting will take place at Helsinki University Hospital from June 4th to 5th, 2020 in Finland.

  • Fri
    15
    May
    2020
    Sat
    16
    May
    2020
    Stockholm, Sweden

    The 10th European Conference on Rare Diseases & Orphan Products (ECRD 2020) will be held at the Stockholmsmässan Congress Center in Stockholm, Sweden on 15 to 16 May 2020.

    ECRD is a biennial event that has allowed the rare disease community to gather since 2001 to monitor and benchmark relevant initiatives, drive the policy framework around rare disease diagnosis, treatment and care and empower the rare disease community to drive change where it is needed most.  Outputs from these conferences have informed national and local policy initiatives and are referenced in decision-making around the provision of services for the community.

    The overarching theme for this conference is The rare disease patient journey in 2030. 

    The European Joint Programme on Rare Diseases serves as official partner of the conference and VASCERN is a proud an Associate Partner of this event.

    Submissions for poster abstracts are open until February 10th, 2019. More information here

    Applications for the Patient Advocate Fellowship Programme are open until December 2nd, 2019. More information here.

    For more information on this event, take a look at the official ECRD website or the ECRD LinkedIn page.

  • Fri
    15
    May
    2020
    Paris, France

    VASCERN's Heritable Thoracic Aortic Diseases Working Group (HTAD-WG) will hold their a face-to-face meeting on May 15th, 2020 in Paris France.

  • 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.

    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.

    More information here

  • Tue
    31
    Mar
    2020
    Brussels, Belgium

    The 7th ERN IT Advisory Group Meeting will take place in Brussels, Belgium on Tuesday March 31st, 2020. Ibrahim Donmez, our IT Helpdesk & End User Support Specialist, will be present at this event.

     

  • Mon
    23
    Mar
    2020
    17:00PM-18:00PM (CET)WebEx

    The HTAD WG Monthly meeting will take place on January 23rd 2020 from 5pm to 6pm (CET).

  • Sat
    21
    Mar
    2020
    Sun
    22
    Mar
    2020
    Paris

    The Ehlers-Danlos Society brings together the leading world experts to discuss the latest medical and scientific information about the Ehlers-Danlos syndromes and hypermobility spectrum disorders.

    The conference covers two separate days: March 21, 2020 is Health Professionals Day and March 22, 2020, is Patients Day for those who have EDS and HSD and their families.

    For both Professionals Day and Patients Day, sessions will be translated into Spanish, French, German, Dutch, and Italian.

    For more information, click here.

  • Fri
    20
    Mar
    2020
    8:00AM-9:00AM (CET)Videoconference call - Webex

    The VASCERN HHT WG monthly meeting #36 will take place on March 20th, 2020 at 8 am (Paris time).

  • Wed
    18
    Mar
    2020
    15:45PM-17:00PM (CET)WebEx

    The VASCA WG Monthly meeting will be taking place on March 18th 2020 from 3:45 pm to 5pm (CET).

  • Mon
    16
    Mar
    2020

    The European Joint Programme on Rare Diseases (EJP RD) Research Mobility Fellowship call aims to financially support young investigators to undertake short scientific visits (secondments) fostering specialist research training outside their countries of residence and within one of the ERN host institutions. The research mobility fellowships cover stays of 2 weeks up to 3 months.

    Target: PhD students and young Medical Doctors (having finished their first year of specialist training)

    Applicants’ profile: PhD students with a minimum of one year of research experience OR Physicians having finished their first year of specialist training AND Affiliated to an ERN institution.

    Deadline for submissions: 16th of March 2020

    For application forms and all other information on this call, go to the EJP-RD info page here.

  • Mon
    16
    Mar
    2020
    17:30PM-18:30PM (CET)WebEx

    The PPL WG monthly meeting will take place on the 16th of March from 5:30 pm to 6:30 pm (CET).

  • Wed
    11
    Mar
    2020
    Sat
    14
    Mar
    2020
    Berlin, Germany

    The International Congress Of Research On Rare And Orphan Diseases co-organized with IRDiRC and EJP-RD will take place from March 11-14, 2020 in Berlin, Germany.

    • To see the agenda: click here 
    • To see the time table : click here 
    • To register (early registration until November 30th, 2019) : click here 

     

  • Tue
    10
    Mar
    2020
    10:00 amZoom

    The VASCERN ePAG monthly meeting will be taking place on the 10th of March 2020 from 10 am to 11:30 am (CET).

  • Fri
    06
    Mar
    2020
    Worldwide

    World Lymphoedema Day 2020 will take place on March 6th, 2020.

    This annual advocate-driven celebration aims to raise awaresness for all types of lymphatic diseases, primary and secondary lymphedema, lipedema, lymphatic filariasis, lymphatic malformations, and the full lymphatic continuum of diseases impacted by the lymphatic system.

    More information here

  • Thu
    05
    Mar
    2020
    Fri
    06
    Mar
    2020
    Italy

    Synergies for defining domain specific "common data elements" across ERNs is a workshop that will take place on 05-06 March 2020 at the JRC premises in Northern Italy (close to Milan).

    VASCERN's Registry Working Group Chair, Professor Leo Schultze Kool, will be in attendance at this event.

  • Wed
    04
    Mar
    2020
    18:00PM-19:00PM (CET)WebEx

    The MSA WG monthly meeting will be taking place on March 4th 2020 at 6pm (CET).

  • Tue
    03
    Mar
    2020

    The Call for the Research - 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 dates in 2020:

    March 3, 2020 at 14:00 (CET)

    June 2, 2020 at 14:00 (CEST)

    September 1, 2020 at 14:00 (CEST)

    December 1, 2020 at 14:00 (CET)

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

  • Mon
    02
    Mar
    2020

    The European Joint Programme on Rare Diseases (EJP RD) Research Training Workshops call aims to identify the most suitable topics for the organization of research training workshops with a cross-ERN added value. Financing covers the organization of a 2 days workshop (e.g. venue, catering & travel and accommodation of speakers and participants).

    Target: Researchers/Medical Doctors

    Applicant’s profile: Affiliated to an EJP RD beneficiary institution OR to an ERN-Full Member OR ERN-Affiliated Partner institution

    Deadline for submissions: March 2nd, 2020

    For application forms and all other information on this call, go to the EJP-RD info page here.

  • Sat
    29
    Feb
    2020
    worldwide

    Rare Disease Day Poster

    The 13th edition of the Rare Disease Day will be held on February 29th 2020 worldwide!

    For this international day initiated by EURORDIS - European Rare Diseases Organisation, the French networks for rare diseases (including FAVA-multi) will be reaching out to the general public by organising various events to raise awareness in cities across France. VASCERN will attend their event happening in Paris, along with several other ERNs coordinated in Paris (including EuroBloodNet and ERN ITHACA)...more details to follow!

    The communications material for Rare Disease day is available on here

  • Fri
    28
    Feb
    2020
    8:00AM-9:00AM (CET)Videoconference call - Webex

    The VASCERN HHT WG monthly meeting #35 will take place on February 28th, 2020 at 8 am (Paris time).

  • Mon
    24
    Feb
    2020
    17:00PM-18:00PM (CET)WebEx

    The HTAD WG monthly meeting will be taking place on February 24th from 5pm to 6pm.

     

  • Thu
    20
    Feb
    2020
    11:00AM-12:00PM (CET)Videoconference call - Webex

    The first meeting of the Knowledge Generation Working Group of 2020 will be held on Thursday 20 February 2020 at 11am.

  • Wed
    19
    Feb
    2020
    Brussels, Belgium

    The 29th EURORDIS Round Table of Companies Workshop will take place on February 19th, 2020 in Brussels, Belgium. It will be a full-day workshop dedicated to the topic of medicines’ repurposing.

    To register and for more information on this event, click here

  • Wed
    19
    Feb
    2020
    15:45PM-17:00PM (CET)WebEx

    The VASCA WG monthly meeting will be taking place on February 19th, 2020 from 3:45 pm to 5 pm (CET).

  • Wed
    19
    Feb
    2020
    17:30PM-19:00PM (CET)WebEx

    The 9th VASCERN Council meeting will take place on February 19th 2020 from 5:30 pm to 7 pm (CET).

  • Tue
    18
    Feb
    2020

    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.

    Pre-proposal submission deadline: 18th February 2020.

    For more information on this call, please click here

     

  • Tue
    18
    Feb
    2020
    Brussels, Belgium

    The EURORDIS Black Pearl Awards will take place in Brussels, Belgium on February 18th, 2020.

    This annual event recognises the outstanding achievements and exceptional work of people making a difference for the rare disease community, such as Claudia Crocione, our European Patient Advocacy Group (ePAG) Co-Chair for Hereditary hemorrhagic telangiectasia (HHT), who will be recognised with the EURORDIS Volunteer Award!

    More information on this event here

  • Mon
    17
    Feb
    2020
    17:30PM-18:30PM (CET)WebEx

    The PPL WG monthly meeting will take place on February 17th, 2020 at 5:30 pm (CET).

  • Tue
    11
    Feb
    2020
    10:00 amZoom

    The VASCERN ePAG Monthly Meeting will be taking place on February 11th from 10 am to 11:30 am (CET).

  • Wed
    05
    Feb
    2020
    18:00PM-19:00PM (CET)WebEx

    The MSA WG monthly meeting will take place on February 6th at 6pm.

  • Sat
    01
    Feb
    2020
    Sat
    29
    Feb
    2020
    worldwide

    February is Marfan Awareness Month, a time for all of us in the community to escalate our efforts to increase Marfan awareness.

    This year, the Marfan Foundation hopes you will join them in the #MarfanVictoryChallenge

    "The idea is to spread the word about Marfan syndrome – through social media; through community events, such as educational events or fundraisers at work, school, or other community settings; or through legislative activities, such as getting a local proclamation for Marfan Awareness Month."

    More information on the Marfan Foundation website 

  • Mon
    27
    Jan
    2020
    17:00PM-18:00PM (CET)Videoconference call - Webex

    The HTAD Monthly meeting will take place on January 27th, 2020 from 5:00pm to 6pm (Paris time).

  • Mon
    27
    Jan
    2020
    8:00AM-9:00AM (CET)Videoconference call - Webex

    The VASCERN HHT WG monthly meeting #34 will take place on January 27th, 2019 at 8 am (Paris time).

  • Wed
    22
    Jan
    2020
    Sat
    25
    Jan
    2020
    Torino, Italy

    The 23rd Conference on Immune Pathologies and Rare Diseases, organised by C.M.I.D. (Centro di Ricerche di Immunopatologia e Documentazione su Malattie Rare) will take place from January 22-25th, 2020 in Torino Italy.

    Pernille Henriksen, ePAG co-Chair for the Pediatric and Primary Lymphedema (PPL-WG), and Elena Matta (ePAG patient advocate for PPL) will be in attendance at this event where they will be representing patients with primary lymphedema. Pernille will be speaking at a session on night time compression and workshops on primary lymphedema for patients and professionals will take place at this event.

    See the preliminary programme here

  • Mon
    20
    Jan
    2020
    17:30PM-18:30PM (CET)Videoconference call - Webex

    The VASCERN PPL WG monthly meeting will take place on January 20th, 2020 from 5:30PM-6:30PM.

  • Wed
    15
    Jan
    2020
    Sat
    18
    Jan
    2020
    Paris, France

    The European Days of the French Society of Cardiology will be held at the Palais des Congrès in Paris from January 15-18th, 2020.

    Both Professor Guillaume Jondeau (VASCERN coordinator) and Professor Julie De Backer (Heritable Thoracic Aortic Diseases (HTAD) Working Group Chair) will be speaking at this event about aortic risk in Marfan Syndrome, monitoring of aortic dilatation in pregnant women with cardiovascular diseases, risk of aortic dissection during pregnancy and more! Assomarfans will also have an information booth at this event to raise awareness for Marfan disease.

    For all information on this event, including the programme, click here

  • Wed
    15
    Jan
    2020
    15:45PM-17:00PM (CET)Videoconference call - Webex

    The VASCA Monthly meeting will take place on January 15th, 2020 from 3:45pm to 5pm (Paris time).

  • Tue
    14
    Jan
    2020
    10:00AM-11:30PM (CET)Zoom

    The ePAG monthly meeting will take place on January 14th, 2020 from 10:00AM-12:00PM

  • Wed
    08
    Jan
    2020
    18:00PM-19:00PM (CET)WebEx

    The VASCERN MSA WG Monthly Meeting will take place on January 8th, 2020 from 6 to 7pm (Paris time).

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