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

    The ERN Coordinators Group Meeting will take place on November 26-27th, 2020 in Brussels, Belgium. Professor Jondeau and Marine Hurard will be attending.

  • Mon
    16
    Nov
    2020
    Wed
    18
    Nov
    2020
    Barcelona, Spain

    Due to the COVID19, the EMBO Workshop on Vascular Malformations has been postponed. The event was due to take place from April 1st to 3rd, 2020 and will now take place from November 16th to 18th, 2020 in Barcelona, Spain.

    Professor Miikka VIKKULA, Chair of the VASCERN Vascular Anomalies Working Group (VASCA WG), will be one of the speakers!

    • Registration deadline: October 19th, 2020
    • Abstract submission deadline: October 19th, 2020
    • Payment deadline: November 1st, 2020

    For more information on this event (programme and registration), take a look here.

  • Sat
    07
    Nov
    2020
    Sun
    08
    Nov
    2020
    Paris

    Due to the recent global updates with COVID-19, the Society has decided to postpone the European Learning Conference and HEDGE study screening in Paris, France, which was due to take place March 21-22, 2020.⁠

    Both the conference and the HEDGE screening have been rescheduled for November 7-8, 2020. November 7, 2020, will be health professionals day (in place of March 21) and November 8, 2020, will be community day for patients, their families and caregivers (in place of March 22).⁠

    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.

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

    For more information, click here.

  • Thu
    05
    Nov
    2020

    The Connecting Europe Facility (CEF) Telecom -2020-2 eHealth call (implemented by The Innovation and Networks Executive Agency (INEA)) was published on June 30th, 2020!

    Read the call document here

    The actions funded under this call for proposals should contribute to:

    • The continued use of the ERN Collaborative Platform (ECP) and of the Clinical
      Patient Management System (CPMS), which facilitate access to highly
      specialised knowledge and care for patients suffering from rare and complex
      diseases.
    • The improvement of current functionalities and adding of new functionalities to
      the ERN Clinical Patient Management System, which will enhance the possibility
      to collect and analyse clinical data across borders to support public health and
      research, and also better adapt the CPMS to the ERN specific clinical needs.
    • The promotion of the European Reference Networks within the medical
      community by suitable learning and training activities.

     

    Deadline for submission of proposals is Thursday 5 November 2020 (5PM Brussels time).

    Evaluation of proposals November 2020 – January 2021 (indicative)

    Consultation of the CEF Committee March – April 2021 (indicative)

    Adoption of the Selection Decision April 2021 (indicative)

    VASCERN will be submitting a proposal in order to ensure the continuation and improvement of the IT services offered to our members (helpdesk, eLearning activities, monitoring system support, and other IT related activities).

    A 2020-2 CEF Telecom call virtual Info Day will occur on 16 July 2020.

    More information on the call can be found here

  • Thu
    22
    Oct
    2020
    Sat
    24
    Oct
    2020
    Paris, France

    VASCERN's annual seminar, VASCERN DAYS 2020, will take place this year from October 22-24th, 2020 in Paris, France.

    Further details to be announced.

  • Thu
    01
    Oct
    2020
    Sat
    03
    Oct
    2020
    Copenhagen, Denmark

    The 10th International Conference of the International Lymphoedema Framework will take place in Copenhagen, Denmark, from October 1-3, 2020.

    For more information, check out their website here.

  • Mon
    28
    Sep
    2020
    Fri
    02
    Oct
    2020
    Online

    An international training course titled "International Summer School on Rare Disease Registries and FAIRification of Data”, Istituto Superiore di Sanità, Rome, Italy, will occur online from September 28th to October 2nd, 2020.

    This initiative is a part of a series of training courses included in the framework of the European Joint Programme on Rare Diseases (EJP RD). For more information about the EJP RD, have a look here: https://www.ejprarediseases.org/

    The 5 days training course is composed of two modules, the first three days on Rare Disease Registries and the final two days on FAIRification of Data. You can attend a single training module or the entire training course.

    Online registration until July 19th, 2020: https://sondage.inserm.fr/index.php/257338/lang-en

    Programme and other information: https://www.ejprarediseases.org/wp-content/uploads/2020/06/EJP-RD_Summer-School-RD-RegistriesFAIRification.pdf

    Important dates, deadlines, and further information: https://www.ejprarediseases.org/index.php/international-summer-school-on-rare-disease-registries-and-fairification-of-data-2/

  • Mon
    28
    Sep
    2020
    5:00PM-6:00PM (CET)Videoconference call - Webex

    The VASCERN HTAD-WG Monthly Meeting will take place on September 28th, 2020 at 5 pm (Paris time).

  • Mon
    21
    Sep
    2020
    5:30PM-6:30PM (CET)Videoconference call - Webex

    The VASCERN PPL-WG Monthly Meeting will take place on September 21st, 2020 at 5:30 pm (Paris time).

  • Wed
    16
    Sep
    2020
    3:45PM-5:00PM (CET)Videoconference call - Webex

    The VASCERN VASCA-WG Monthly Meeting will take place on September 16th, 2020 at 3:45 pm (Paris time).

  • Mon
    14
    Sep
    2020
    Thu
    17
    Sep
    2020
    Online

    The European Joint Programme on Rare Diseases (EJP RD) General Assembly and consortium meeting will exceptionally take place online this year and will run from September 14th to September 17th, 2020.

    The agenda and more details will be announced soon!

  • Mon
    14
    Sep
    2020
    5:00PM-6:00PM (CET)Videoconference call - Webex

    The VASCERN MSA-WG Monthly Meeting will be taking place on September 14th, 2020 at 5 pm (Paris time).

  • Wed
    02
    Sep
    2020
    6:00PM-7:30PM (CET)Videoconference call - Webex

    The 11th VASCERN Council Meeting will take place on September 2nd, 2020 from 6 pm to 7:30 pm (Paris time).

  • Tue
    01
    Sep
    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:

    • June 2, 2020 at 14:00 (CEST)
      IMPORTANT. This collection date is cancelled due to the COVID-19 outbreak.
    • September 1, 2020 at 14:00 (CEST)
      IMPORTANT. Exceptional extension in comparison to Call text: events may be organised between 6 and 18 months after the application date.
    • December 1, 2020 at 14:00 (CET)

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

  • Sat
    29
    Aug
    2020
    Tue
    01
    Sep
    2020
    Online

    The European Society of Cardiology (ESC) Congress 2020 will take place online from August 29th to September 1st, 2020.

    For more information visit the event's website here.

  • Tue
    25
    Aug
    2020
    Sat
    12
    Sep
    2020
    Online

    VASCERN has partnered with The Marfan Foundation to co-lead the upcoming online E3 International Summit: Educating, Empowering, and Enriching Our Community, which will run from Tuesday, August 25th – Saturday, September 12th, 2020 and will feature medical experts from all over the world on a variety of topics related to the diagnosis and treatment of Marfan syndrome, Loeys-Dietz syndrome (LDS), vEDS (Vascular Ehlers-Danlos syndrome), and related conditions.

    CLICK HERE TO REGISTER NOW!

    Members of the Heritable Thoracic Aortic Diseases (HTAD) and Medium-Sized Arteries (MSA) Working Groups, along with other world renowned experts, will offer live online presentations and question and answer sessions. A selection of quality of life presentations will also be on the schedule in order to complement the medical information. In order to make this program accessible to a larger international audience, medical presentations will be available in six languages: English, Spanish, Italian, French, German, and Dutch.

    Highlights include:

    • The ABCs of Marfan in six different languages
    • Research talks that address recent breakthroughs and hope for the future
    • Several specialized talks on each of the following: Marfan, VEDS, Loeys-Dietz, Stickler Syndrome, and Heritable Thoracic Aortic Conditions
    • A focus on treating and coping with pain, with presentations on pain management, building resiliency, physical therapy, and medical marijuana
    • Presentations on pregnancy, foot and ankle pain, eye issues, dental concerns, lung issues, and more
    • Talks on topics that can enhance quality of life, such as the healing power of laughter, art therapy, and mental fortitude
    • Presentations that address children’s medical issues related to Marfan, VEDS, and Loeys-Dietz, as well as how to deal with your child’s school, anti-bullying techniques, and preparing your child for surgery
    • Opportunities to connect with other people in the worldwide community through the Summit app

     

    See the full agenda here

    For the latest information on this event, visit the event page on the Marfan Foundation website here

  • Mon
    24
    Aug
    2020
    5:00PM-6:00PM (CET)Videoconference call - Webex

    The VASCERN HTAD-WG Monthly Meeting will take place on August 24th, 2020 at 5 pm (Paris time).

  • Wed
    19
    Aug
    2020
    3:45PM-5:00PM (CET)Videoconference call - Webex

    The VASCERN VASCA-WG Monthly Meeting will take place on August 19th, 2020 at 3:45 pm (Paris time).

  • Fri
    24
    Jul
    2020
    8:00AM-9:00AM (CET)Videoconference call - Webex

    The VASCERN HHT-WG Monthly Meeting #38 will take place on July 24th, 2020 at 8 am (Paris time).

  • Thu
    23
    Jul
    2020
    9AM-1PM (CET)Videoconference call - Webex

    The ERN Project Managers Meeting (part 2) will take place on Thursday July 23rd, 2020 at 9AM (Paris time).

  • Mon
    20
    Jul
    2020
    5:30PM-6:30PM (CET)Videoconference call - Webex

    The VASCERN PPL-WG Monthly Meeting will take place on July 20th, 2020 at 5:30 pm (Paris time).

  • Thu
    16
    Jul
    2020
    9:30AM-2:10PM CETVideoconference call - Webex

    The 2020-2 CEF Telecom call virtual Info Day will take place on Thursday 16 July 2020 and will cover seven priorities of the 2020 CEF Telecom calls that opened on June 30th, 2020.

    Register here

    For agenda and more information, visit the event page 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.

  • Wed
    15
    Jul
    2020
    3:45PM-5:00PM (CET)Videoconference call - Webex

    The VASCERN VASCA-WG Monthly Meeting will take place on July 15th, 2020 at 3:45 pm (Paris time).

  • Wed
    15
    Jul
    2020
    9AM-1PM (CET)Videoconference call - Webex

    The ERN Project Managers Meeting (part 1 of 2) will take place on Wednesday July 15th, 2020 at 9AM. Marine Hurard, VASCERN Project Manager, will be in attendance at this event.

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

    The VASCERN ePAG Monthly Meeting will be taking place on July 14th, 2020 from 10 am to 11:30 am (Paris time).

  • Thu
    09
    Jul
    2020
    2:30PM-3:30PM (CET)Videoconference call - Webex

    The VASCERN Registry WG Kick-Off Meeting will take place online on July 9th, 2020 at 2:30 pm (Paris time).

  • Mon
    06
    Jul
    2020
    3:30PM-4:30PMWebEX

    The 1st ERN Transversal Study Group on Pregnancy and Family Planning will take place on Monday July 6th, 2020 at 3:30PM CET.

    This new ERN Study Group will allow for the creation of strong synergies with already existing initiatives as well as promote a transversal approach to the important topic of pregnancy and family planning in all rare and complex diseases. Members of VASCERN (Professor Julie De Backer (HTAD WG Chair) and Doctor Leema Robert (MSA WG Chair)) will be in attendance at this event along with members from at least 18 other ERNs.

  • Fri
    26
    Jun
    2020
    9:00AM-1:30PM (CET)Videoconference call - Webex

    This year, the annual FAVA-Multi (The French Network for Rare Vascular Diseases) Day will take place online from 9AM-1:30PM on Friday June 26th, 2020.

    VASCERN Project manager, Marine Hurard, will give a short presentation on the latest VASCERN and ERN news and will answer any questions.

  • Thu
    25
    Jun
    2020
    2:00PM-5:00PM (CET)Videoconference call - Webex

    Due to the COVID-19, the VASCERN MSA-WG Meeting will now take place online. The meeting will occur on June 25th, 2020 from 2 pm to 5 pm (Paris time).

  • Mon
    22
    Jun
    2020
    5:00PM-6:00PM (CET)Videoconference call - Webex

    The VASCERN HTAD-WG Monthly Meeting will take place on June 22nd, 2020 at 5 pm (Paris time).

  • Thu
    18
    Jun
    2020
    4:30PM-6:00PM (CET)Zoom

    EURORDIS will organise a webinar on June 18th from 16.30 to 18.00 (CEST) to provide an opportunity to have a preliminary discussion on what are the data needs of the ERNs and how to progress towards a comprehensive ERN data strategy.

    The webinar is open to ePAG advocates, RD National Alliances and EU Federations, ERN Coordinators and Project Managers, Hospital Managers, European Commission and all interested in attending.

    Please register using the following link: https://us02web.zoom.us/webinar/register/WN_-cl6DH9lQLe-15MHOPJp0w 

  • Wed
    17
    Jun
    2020
    3:45PM-5:00PM (CET)Videoconference call - Webex

    The VASCERN VASCA-WG Monthly Meeting will take place on June 17th, 2020 at 3:45 pm (Paris time).

  • Wed
    17
    Jun
    2020
    9:00AM-12:30PM (CET)Videoconference call - Webex

    Professor Jondeau and Marine Hurard will be attending the ERN Coordinators Group Meeting, which will occur online on June 17th, 2020.

  • Mon
    15
    Jun
    2020
    6:30PM-8:00PM (CET)Videoconference call - Webex

    The Internal ERN Coordinator's Group Meeting will take place online at June 15th, 2020 at 6:30PM.

  • Fri
    12
    Jun
    2020
    9:00AM-12:30PM (CET)Videoconference call - Webex

    Due to the COVID-19, the VASCERN HHT-WG Meeting will now take place online. The meeting will occur on June 12th, 2020 from 9 am to 12:30 pm (Paris time).

  • Tue
    09
    Jun
    2020
    10:00AM-11:30AM (CET)Zoom

    The VASCERN ePAG Monthly Meeting will be taking place on June 9th, 2020 from 10 am to 11:30 am (Paris time).

  • Tue
    09
    Jun
    2020
    11:00AM-12:00PM (CET)WebEX

    In the context of COVID-19 pandemic and launching of the ‘COVID-19 Clinical Management Support System’, DG SANTE has been organising a series of webinars to support clinicians and other healthcare professionals at the frontline who treat the patients with COVID-19.

    The webinar: "Impact of COVID 19 for people living with a Rare Disease" will take place on Tuesday, June 9th, 2020 from 11.00 – 12.00 CET and will feature speakers from EURORDIS (Inés Hernando, ERN and Healthcare Director and Sandra Courbier, Social Research Director). The results of the latest Rare Barometer Survey, "Rare disease patients' experience of COVID-19", will be presented!

    To join the webinar, click the following link: https://europaevent.webex.com/europaevent/onstage/g.php?MTID=ee90be256b3426dd2ef596106f27bdc45

    meeting ID (access code) (if requested): 956 694 201

    For agenda and more technical information on how to join, click the link here.

  • Thu
    04
    Jun
    2020
    Fri
    05
    Jun
    2020
    Videoconference call - Webex

    Due to the COVID-19, the VASCERN PPL-WG Meeting will now take place online. There will be NO on-site event in Helsinki. The meeting will occur from June 4th to 5th, 2020 from 9 am to 12 pm (Paris time).

  • Wed
    03
    Jun
    2020
    6:00PM-7:00PM (CET)Videoconference call - Webex

    The VASCERN MSA-WG Monthly Meeting will be taking place on June 3rd, 2020 at 6 pm (Paris time).

  • Mon
    25
    May
    2020
    5:00PM-6:00PM (CET)Videoconference call - Webex

    The VASCERN HTAD-WG Monthly Meeting will take place on May 25th, 2020 at 5 pm (Paris time).

  • Wed
    20
    May
    2020
    3:45PM-5:00PM (CET)Videoconference call - Webex

    The VASCERN VASCA-WG Monthly Meeting will take place on May 20th, 2020 at 3:45 pm (Paris time).

  • Mon
    18
    May
    2020
    Tue
    19
    May
    2020
    Online

    The Rare Diseases International (RDI) 6th Annual Meeting will be hosted completely online from May 18th to 19th, 2020. This event will bring together rare disease patient organisations from Latin America, North America, Europe, Asia and Africa to learn from each other and carry the voice of patients from their disease areas, countries and regions.

    For more information on this event and to see the programme, click here.

  • Thu
    14
    May
    2020
    Fri
    15
    May
    2020
    Videoconference

    Due to the COVID-19 novel coronavirus pandemic, the International Society for the Study of Vascular Anomalies (ISSVA) 23rd Workshop for the Study of Vascular Anomalies, that was scheduled to take place in Vancouver, British Columbia, Canada from May 12-15, 2020 has been postponed by two full years, to 10-13 May 2022

    In place of an in-person meeting in 2020, there will be an ISSVA Online Workshop on the Thursday and Friday of the original meeting dates: 14-15 May 2020!

    The Scientific Program will be based on the in-person meeting's program and will be a venue to present the latest advances in research and science in vascular anomalies. ISSVA Online 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.

    Members of the Vascular Anomalies (VASCA) Working Group will attend this online event and various posters by the group will be presented.

    Click here to register.

    If you have already registered for the ISSVA 2020 (Vancouver) in person meeting, you can transfer your registration fees to the ISSVA Online Workshop by using the below survey: Transfer your ISSVA 2020 (Vancouver) Registration to the Online Workshop.

    More information on the ISSVA Online Workshop here.

  • Thu
    14
    May
    2020
    Fri
    15
    May
    2020
    100% Online

    In the context of the current COVID-19 pandemic and in line with WHO guidelines, the upcoming ECRD will now take place ONLINE from May 14th to 15th, 2020. There will be NO on-site event in Stockholm. 

    More information here.

    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 proud to be an Associate Partner of this event.

    Submissions for poster abstracts are open until February 10th, 2020. 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.

  • Thu
    14
    May
    2020
    5:30PM-7:00PM (CET)Videoconference call - Webex

    VASCERN will hold a webinar on Thursday May 14, 2020 from 5:30-7pm CET on Heritable Thoracic Aortic Diseases (HTAD) and Covid-19.

    This webinar features a brief introduction on COVID-19 and the cardiovascular system, followed by a Q&A session!

    Elena De Moya Rubio (ePAG Co-Chair for HTAD) and Françoise Steinbach (ePAG Deputy Co-Chair for HTAD) will ask the questions provided by HTAD patients (collected by Elena) and they will be answered by HTAD WG Chair and Co-Chair, Prof. Julie De Backer and Prof. Guillaume Jondeau.

    The webinar will take place on the WebEx platform. To receive the WebEx link to connect to the webinar (or to receive the recording), please register below:

    VASCERN webinar: HTAD and COVID-19 - Q&A session

    Please note all personal data collected will only be used to send the links and will be deleted after the webinar.

  • Tue
    12
    May
    2020
    10:00AM-11:30AM (CET)Zoom

    The VASCERN ePAG Monthly Meeting will be taking place on May 12th, 2020 from 10 am to 11:30 am (Paris time).

  • Tue
    28
    Apr
    2020
    Wed
    29
    Apr
    2020
    9:00AM-13:00PM (CET)Videoconference call - Webex

    Due to the COVID-19, the VASCERN VASCA-WG Meeting will now take place online. There will be NO on-site event in Brussels. The meeting will occur from April 28th to 29th, 2020 from 9 am to 13 pm (Paris time).

  • Mon
    27
    Apr
    2020
    5:00PM-6:00PM (CET)Videoconference call - Webex

    The VASCERN HTAD-WG Monthly Meeting will take place on April 27th, 2020 at 5 pm (Paris time).

  • Mon
    20
    Apr
    2020
    5:30PM-6:30PM (CET)Videoconference call - Webex

    The VASCERN PPL-WG Monthly Meeting will take place on April 20th, 2020 at 5:30 pm (Paris time).

  • Wed
    15
    Apr
    2020
    3:45PM-5:00PM (CET)Videoconference call - Webex

    The VASCERN VASCA-WG Monthly Meeting will take place on April 15th, 2020 at 3:45 pm (Paris time).

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

    The VASCERN ePAG Monthly Meeting will be taking place on April 14th, 2020 from 10 am to 11:30 am (Paris time).

  • Tue
    31
    Mar
    2020
    Videoconference call - Webex

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

  • 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).

  • 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: March 16th, 2020

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

  • Mon
    16
    Mar
    2020
    5:30PM-6:30PM (CET)Videoconference call - Webex

    The VASCERN PPL-WG Monthly Meeting will take place on March 16th, 2020 from 5:30 pm to 6:30 pm (Paris time).

  • Wed
    11
    Mar
    2020
    6:00PM-7:00PM (CET)Videoconference call - Webex

    The 10th VASCERN Council Meeting will take place on March 11th, 2020 from 6 pm to 7 pm (Paris time).

  • Tue
    10
    Mar
    2020
    10:00AM-11:30AM (CET)Zoom

    The VASCERN ePAG Monthly Meeting will be taking place on March 10th, 2020 from 10 am to 11:30 am (Paris time).

  • Fri
    06
    Mar
    2020
    Worldwide

    World Lymphedema 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.

    In preparation of this international event, the patient advocates of our European Patient Advocacy Group (ePAG) for Pediatric and Primary Lymphedema (PPL) have created various important documents, including:

    More information on the World Lymphedema Day website here.

  • Wed
    04
    Mar
    2020
    6:00PM-7:00PM (CET)Videoconference call - Webex

    The VASCERN MSA-WG Monthly Meeting will be taking place on March 4th, 2020 at 6 pm (Paris time).

  • 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
    5:00PM-6:00PM (CET)Videoconference call - Webex

    The VASCERN HTAD-WG Monthly Meeting will be taking place on February 24th, 2020 from 5 pm to 6 pm (Paris time).

  • 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 February 20th, 2020 at 11 am.

  • 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
    3:45PM-5:00PM (CET)Videoconference call - Webex

    The VASCERN VASCA-WG Monthly Meeting will be taking place on February 19th, 2020 from 3:45 pm to 5 pm (Paris time).

  • Wed
    19
    Feb
    2020
    5:30PM-7:00PM (CET)Videoconference call - Webex

    The 9th VASCERN Council Meeting will take place on February 19th, 2020 from 5:30 pm to 7 pm (Paris time).

  • 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
    5:30PM-6:30PM (CET)Videoconference call - Webex

    The VASCERN PPL-WG Monthly Meeting will take place on February 17th, 2020 at 5:30 pm (Paris time).

  • Tue
    11
    Feb
    2020
    10:00AM-11:30AM (CET)Zoom

    The VASCERN ePAG Monthly Meeting will be taking place on February 11th, 2020 from 10 am to 11:30 am (Paris time).

  • Wed
    05
    Feb
    2020
    6:00PM-7:00PM (CET)Videoconference call - Webex

    The VASCERN MSA-WG Monthly Meeting will take place on February 5th, 2020 at 6 pm (Paris time).

  • 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
    5:00PM-6:00PM (CET)Videoconference call - Webex

    The VASCERN HTAD-WG Monthly Meeting will take place on January 27th, 2020 from 5 pm to 6 pm (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, 2020 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
    5:30PM-6:30PM (CET)Videoconference call - Webex

    The VASCERN PPL-WG Monthly Meeting will take place on January 20th, 2020 from 5:30 pm to 6:30 pm (Paris time).

  • 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
    3:45PM-5:00PM (CET)Videoconference call - Webex

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

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

    The VASCERN ePAG Monthly Meeting will take place on January 14th, 2020 from 10 am to 11:30 am (Paris time).

  • Wed
    08
    Jan
    2020
    6:00PM-7:00PM (CET)Videoconference call - Webex

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

Comments are closed