• 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

    The European Joint Programme on Rare Diseases launched on December 12 the Joint Transnational Call 2023, a funding opportunity for research projects on the development of new analytic tools and pathways to accelerate diagnosis and facilitate diagnostic monitoring of rare diseases.

    This year’s topic is: “Natural History Studies addressing unmet needs in Rare Diseases”
    The aim of the funding opportunity is to enable scientists in different countries to build an effective collaboration on a common interdisciplinary research project based on complementarities and sharing of expertise, with expected impact to use the results in the future for benefit of patients.

    Don’t miss out on the information webinar will be held on December 15th for potential applicants. Register here: https://forms.office.com/r/CLYFTuzRyw

    Try the matchmaking tool to help you find your ideal project partner! (Under the tab Consortium makeup)

    Pre-proposal submission deadline: 15th February 2023

    More information here https://www.ejprarediseases.org/joint-transnational-call-2023/

  • 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

    IRDiRC launches the Call for Members for the four new Task Forces of the 2023 Roadmap.

    Check out the newly approved Task Forces:

    • Funding Models to Support the Spectrum of Rare Disease Research and Development

    The overall objective of this Task Force is to identify how different types of funders make decisions about when to fund at a given stage in a treatment’s development and the factors that contribute to this process.

    More details on the candidates profiles: here.

    • Framework to assess impacts associated with diagnosis, treatment, support, and community integration

    The overall objective of this Task Force is to develop, operationalize, and test a comprehensive framework of holistic, multidimensional, and evolving life-long experiences of patients and families living with a rare disease.

    More details on candidates profiles: here.

    • Functional Analysis

    The overall objective of this Task Force is to create a framework for the robust and effective ecosystem of functional analyses in rare diseases.

    More details on candidates profiles: here.

    • Preparing for genetic N-of-1 treatments of patients with ultra-rare mutations 

    The overall objective of this Task Force is to connect different N-of-1+ efforts to reduce duplication, achieve global consensus and create a roadmap towards development and implementation of N-of-1+ treatment.

    More details on candidates profiles: here.

    How to Apply?

    If you are interested in taking part in any of these activities please send a CVbiosketch, and letter of motivation (one paragraph each) to the IRDiRC Scientific Secretariat (scisec-irdirc@ejprarediseases.org) with the email title “TF Member Application-IRDiRC-Impacts” before 20 February 2023.

  • 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).

  • 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/

  • 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/

  • 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 will soon be available on the website.

  • 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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