• Thu
    05
    Jan
    2023
    5.00PM-6.00PMOnline

    The VASCERN MSA-WG Monthly Meeting will take place on January 5th, 2023 at 5.00 pm (Paris time).

  • Mon
    16
    Jan
    2023
    5:30PM-6.30PMOnline

    The VASCERN PPL-WG Monthly Meeting will take place on January 16th, 2023 at 5.30 pm (Paris time).

  • Wed
    18
    Jan
    2023
    4.00PM-5.00PMOnline

    The VASCERN VASCA-WG Monthly Meeting will take place on January 18th, 2023 at 4.00 pm (Paris time).

  • Thu
    19
    Jan
    2023
    5:30PM-6.30PMOnline

    The VASCERN NEUROVASC-WG Monthly Meeting will take place on January 19th, 2023 at 5.30 pm (Paris time).

  • Mon
    23
    Jan
    2023
    5.00PM-6.30PMOnline

    The VASCERN HTAD-WG Monthly Meeting will take place on January 23rd, 2023 at 5.00 pm (Paris time).

  • Tue
    24
    Jan
    2023
    10.00AM-11.30AMOnline

    The VASCERN ePAG Monthly Meeting will take place on January 24th, 2023 at 10.00 am (Paris time).

  • Fri
    27
    Jan
    2023
    8.00AM-9.00AMOnline

    The VASCERN HHT-WG Monthly Meeting will take place on January 27th, 2023 at 8.00 am (Paris time).

  • Mon
    30
    Jan
    2023
    Tue
    31
    Jan
    2023
    Brussels, Belgium

    The VASCERN VASCA-WG Winter meeting will take place from the 30th to 31st of February, 2023 in Brussels, Belgium.

  • Tue
    31
    Jan
    2023
    Fri
    03
    Feb
    2023
    Brussels, Belgium

    V.A. Cure network are pleased to invite you to VAC 2023, our international conference on Vascular Anomalies, which will be held in Brussels from 31 January to 3 February 2023. The conference is organized by the V.A. Cure network, an EU-MSCA-ITN project that performs vascular research with the aim to find new treatment strategies for vascular anomalies.

    VAC 2023 is about the latest developments in basic, translational and clinical research in vascular anomalies. With lectures by top experts in these fields and many opportunities for networking, it will be a unique occasion to exchange knowledge among key players in the chain from fundamental research to clinical applications.

    We hope to see you in Brussels!

    More information and registration: https://vacure-conference.net/

  • Thu
    02
    Feb
    2023
    5.00PM-6.00PMOnline

    The VASCERN MSA-WG Monthly Meeting will take place on February 2nd, 2023 at 5.00 pm (Paris time).

  • Tue
    14
    Feb
    2023
    10.00AM-11.30AMOnline

    The VASCERN ePAG Monthly Meeting will take place on February 14th, 2023 at 10.00 am (Paris time).

  • Wed
    15
    Feb
    2023
    4.00PM-5.00PMOnline

    The VASCERN VASCA-WG Monthly Meeting will take place on February 15th, 2023 at 4.00 pm (Paris time).

  • Thu
    16
    Feb
    2023
    5:30PM-6.30PMOnline

    The VASCERN NEUROVASC-WG Monthly Meeting will take place on February 16th, 2023 at 5.30 pm (Paris time).

  • Mon
    20
    Feb
    2023
    5:30PM-6.30PMOnline

    The VASCERN PPL-WG Monthly Meeting will take place on February 20th, 2023 at 5.30 pm (Paris time).

  • Fri
    24
    Feb
    2023
    8.00AM-9.00AMOnline

    The VASCERN HHT-WG Monthly Meeting will take place on February 24th, 2023 at 8.00 am (Paris time).

  • Mon
    27
    Feb
    2023
    5.00PM-6.30PMOnline

    The VASCERN HTAD-WG Monthly Meeting will take place on February 27th, 2023 at 5.00 pm (Paris time).

  • Tue
    28
    Feb
    2023

    VASCERN will participate in  the international rare disease day on the 28th of February, 2023.

    More information on :  https://www.rarediseaseday.org

  • Tue
    28
    Feb
    2023
    5:00 pmOnline

    VASCERN will hold a webinar on Tuesday February 28, 2023 at 5 PM (CET) titled: Genetics and Lymphedema.

    Presenters include members of the Pediatric and Primary Lymphedema Working Group (PPL-WG) :Prof. Sahar Mansour and Carina Mainka (ePAG advocate for PPL).

    This webinar will be a question and answer session with our expert. It is directed towards patients with Primary Lymphedema.

    Register here
  • Thu
    02
    Mar
    2023
    5.00PM-6.00PMOnline

    The VASCERN MSA-WG Monthly Meeting will take place on March 2nd, 2023 at 5.00 pm (Paris time).

  • Fri
    10
    Mar
    2023
    Milan, Italy

    The VASCERN NEUROVASC-WG Monthly Meeting will take place on March 10th, 2023.

  • Tue
    14
    Mar
    2023
    10.00AM-11.30AMOnline

    The VASCERN ePAG Monthly Meeting will take place on March 14th, 2023 at 10.00 am (Paris time).

  • Wed
    15
    Mar
    2023
    Sat
    18
    Mar
    2023
    Berlin, Germany

    EJP RD is pleased to announce that the next edition of the 7th RE(ACT) Congress and 5th IRDiRC Conference will be held in person in Berlin, Germany from March 15th – 18th, 2023.

    The joint event “RE(ACT) Congress and IRDiRC Conference 2023” aims to bring together scientific leaders and experts and young scientists from various breakthrough scientific fields to present cutting-edge research, exchange ideas, and discuss rare diseases research policies. Patients and patient organizations committed to research will also be in attendance to share their experiences and perspectives.

    The RE(ACT) Congress and IRDiRC Conference 2023 represents an exciting program with outstanding speakers and an in-person event with multiple ways of networking!

    We look forward to welcoming you to Berlin in March 2023. More information here: https://www.ejprarediseases.org/save-the-date-react-congress-and-irdirc-conference-2023/

  • Wed
    15
    Mar
    2023
    4.00PM-5.00PMOnline

    The VASCERN VASCA-WG Monthly Meeting will take place on March 15th, 2023 at 4.00 pm (Paris time).

  • Thu
    16
    Mar
    2023
    5:30PM-6.30PMOnline

    The VASCERN NEUROVASC-WG Monthly Meeting will take place on March 16th, 2023 at 5.30 pm (Paris time).

  • Fri
    17
    Mar
    2023

    Description: The pilot grant is intended to encourage exploratory research, to develop and test exciting new hypotheses or research approaches that have the potential to significantly advance our understanding and/or treatment of CCLA, GLA, GSD, or KLA.

    Areas of interest include, but are not limited to, genetic analysis, biomarker identification, and characterization of the microenvironment of malformations.

    Funding level: Maximum of $75,000 may be requested

    Period: Up to 1 year of support is available

    How to apply: Submit a letter of intent (LOI) to the LMI. If your LOI is selected, you will be invited to submit a full grant application.

    LOIs for Pilot and Established Investigator Awards are due by March 17, 2023. LOIs should be submitted to grants@lmiresearch.org by 11:59 PM CST.

    Please visit https://www.lmiresearch.org/apply-for-funding/ to download grant application forms and instructions.

  • Mon
    20
    Mar
    2023
    5.30PM-6.30PMOnline

    The VASCERN PPL-WG Monthly Meeting will take place on March 20th, 2023 at 5.30 pm (Paris time).

  • Fri
    24
    Mar
    2023
    8.00AM-9.00AMOnline

    The VASCERN HHT-WG Monthly Meeting will take place on March 24th, 2023 at 8.00 am (Paris time).

  • Mon
    27
    Mar
    2023
    5.00PM-6.30PMOnline

    The VASCERN HTAD-WG Monthly Meeting will take place on March 27th, 2023 at 5.00 pm (Paris time).

  • Sun
    02
    Apr
    2023

    The Interdisciplinary Scientific Committee (ISC) is a multi-stakeholder, multi-disciplinary group of experts in rare diseases medical research with a strong expertise in data sharing, registries, biobanks and natural history studies.

    ISC has one opening for a new member with experience in rare diseases data sharing, ontologies, natural history, biobanking and registries.
    Interested candidates are invited to send their resume, biosketch and letter of motivation to  scisec-irdirc@ejprarediseases.org before the 2nd of April, 2023.

    More information about the Interdisciplinary Scientific Committee (ISC): https://irdirc.org/isc/

  • Mon
    03
    Apr
    2023
    Rome, Italy

    As part of the training activities proposed by EJP RD, an 3-day training course on “Training on strategies to foster solutions of undiagnosed rare disease cases” is being organised by Istituto Superiore di Sanità (ISS) in close collaboration with EJP RD partners. The training will be held in Rome, Italy on 3-5 April 2023.

    Through the presentation of sample use cases that have long eluded diagnosis, the course will provide participants with with useful tools, instruments and knowledge on novel strategies to foster solutions of undiagnosed rare diseases cases. Moreover, the course will facilitate networking among professionals involved in undiagnosed rare conditions.

    The course is open to the international research community, to clinicians and to medical specialists who have experience and concrete interest in the diagnosis and research on rare diseases.

    To ensure active participation and exchange with teaching staff and participants, a maximum of 30 attendees will be admitted.

    Registration is mandatory and is currently open. Registration closes on February 15th.

    More information and registration here: https://www.ejprarediseases.org/event/training-on-strategies-to-foster-solutions-of-undiagnosed-rare-disease-cases-3/

  • Wed
    12
    Apr
    2023
    8.00PM-9.00PMOnline

    Save the date: The Marfan Foundation is hosting a webinar titled Genetic Testing: US & Europe on April 12, 2023, from 8-9 PM CEST.

    Dr. Laura MUINO MOSQUERA, from Ghent University Hospital, Belgium and member of the Heritable Thoracic Aortic Disease (HTAD WG), and Dr. Jessica D. KUSHNER, from Oregon Health & Science University, USA will be presenting about genetic testing - when genetic testing is recommended, who should get it, the benefits and possible outcomes.

    Learn more and REGISTER HERE

  • Tue
    18
    Apr
    2023
    6:00 pmOnline

     

    VASCERN will hold a webinar on Tuesday April 18, 2023 at 6 PM (CET) titled: Everything you wanted to know about vascular Ehlers-Danlos Syndrome.

    Presenters include members of the Medium Sized Arteries Diseases Working Group (MSA-WG):Prof. Tristan Mirault, Dr. Anna Stenborg, and Eva Collado (ePAG Co-Chair for MSA).

    This webinar will be a question and answer session with our experts. It is directed towards patients with Vascular Ehlers-Danlos Syndrome (vEDS), but open to all interested.

    Register here
  • Fri
    21
    Apr
    2023
    Sat
    22
    Apr
    2023
    Paris, France

    The ESC Working Group on Adult Congenital Heart Disease is looking forward to coming together for its annual in-person meeting, EuroACHD 2023 (formerly known as EuroGUCH), taking place on 21-22 April 2023 at Hôpital Européen Georges-Pompidou in Paris.

    We invite you to visit the congress website and check the scientific programme through the following link: EuroACHD 2023

    Register now to benefit from the early fee!

  • Wed
    26
    Apr
    2023

    Develop your leadership skills in Poland… with your accommodation and meal costs covered!

    Apply now to receive one of the 21 fellowships on offer for the #EJPRD Leadership and Communications Skills training for patient advocates. Your accommodation and meals during training hours will be covered, as well as up to 435€ of travel costs. We are committed to ensuring that our training is accessible to patient representatives and advocates from all backgrounds, with those from Eastern Europe particularly encouraged to apply.

    🚨 Fellowship applications are open until 26th April 2023.

    📍 Gdańsk, Poland

    📆 26 – 27 October, 2023

    ℹ️ More information: https://www.ejprarediseases.org/event/training-for-patient-representatives-and-advocates-on-leadership-and-communication-skills-2/

  • Mon
    08
    May
    2023
    Tue
    09
    May
    2023
    Nijmegen-Lent, The Netherlands

    In the context of EJP RD’s ERN Workshops, a face-to-face workshop entitled “EJP RD – ERN Workshop: RARE TOGETHER” is being organized by Dr Rosanne Smits from Radboud University Medical Center.

    The in-person event will take place on 8-9 May 2023 at Van der Valk Hotel in Nijmegen-Lent, The Netherlands.

    Registration is open here, and closes on February 1st.

    The workshop, open to all research levels and aims to to raise awareness for the psychosocial impact of having a rare disease and form a group of researchers in the mental well-being and social sciences domain for rare diseases.

    More information here

  • Tue
    13
    Jun
    2023
    Thu
    15
    Jun
    2023
    Nottingham, UK

    Save the date! We are pleased to announce that the 11th International Lymphoedema Framework Conference will take place on 13 – 15 June 2023 in Nottingham, UK. The venue is the East Midlands Conference Centre, University of Nottingham.

    The conference is organised in collaboration with the Welsh framework, Lymphoedema Wales.

    An inspiring scientific programme is being prepared with plenty of possibilities for gaining new knowledge and sharing experiences about lymphoedema and related disorders, and for networking with health care professionals and patients from all over the world.

    More information and registration here

  • Sat
    24
    Jun
    2023
    Sun
    25
    Jun
    2023
    Antwerp, Belgium

    We are pleased to announce the 1st European Loeys-Dietz Syndrome Patient and Research Networking Conference organized by Prof. Bart Loeys & Prof. Harry Dietz.

    This two-day conference will be held in Antwerp, Belgium from June 24th - 25th. There will be presentations on the patient perspective, basics and genetics of LDS, cardiovascular imaging and treatment, and more including breakout sessions for patients and families.

    Registration is open here and closes on May 25.

    More information here

  • Thu
    05
    Oct
    2023
    Fri
    06
    Oct
    2023

    We are excited to announce that VASCERN Days 2023 will take place from October 5 to 6, 2023. This will be an amazing opportunity for our members, guests, and stakeholders to interact, exchange ideas, and discuss new research advancements in their respective fields.

    This event will take place at an exciting location which we will announce in the coming months. Stay tuned to our website and social media accounts for updates, and if you have any questions or queries, please do not hesitate to reach out to us.

    We look forward to seeing you there!

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