• Thu
    18
    Nov
    2021
    Sat
    20
    Nov
    2021
    Copenhagen, Denmark

    The 10th International Conference of the International Lymphoedema Framework will take place in Copenhagen, Denmark, from November 18-20th, 2021 (new dates due to COVID-19).

    Pernille Henriksen, ePAG Co-Chair for PPL WG, will be present at this event and will give a presentation entitled Infections; the experiences, the fear and the solutions from a patient point of view for the patient day.

    See the preliminary programme here.

    For more information, check out their website here.

  • Thu
    28
    Oct
    2021
    Fri
    29
    Oct
    2021
    Online

    The PIK3CA Related Conditions International Scientific Meeting is hosted and sponsored by CLOVES Syndrome Community and will take place online from October 28th to 29th, 2021.

    This meeting will focus on the diverse range of phenotypes of the spectrum that share a PIK3CA mutation.

    The goals for this meeting are:

    • To bring together the experts in the PIK3CA pathway including clinicians, clinical researchers and basic scientists to allow opportunities to present new information, share data, foster collaboration and encourage networking.
    • To stimulate new ideas.
    • To encourage new researchers to enter the field, to collaborate with others in the field and to collaborate with our patient organizations.
    • To identify the gaps and unmet needs for our heterogenous patient populations.

     

    Professor Miikka VIKKULA, Chair of our Vascular Anomalies Working Group (VASCA-WG), is one of the Scientific Meeting Chairs.

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

  • Fri
    22
    Oct
    2021
    8:30AM-4:00PM (CET)Strasbourg, France

    The ERN Coordinators Group Meeting will take place on October 22nd, 2021 from 8:30 AM to 4 PM (CET) in Strasbourg (France).

  • Thu
    07
    Oct
    2021
    Sat
    09
    Oct
    2021
    Paris, France

    VASCERN Days 2021 will take place from October 7-9th, 2021 in Paris, France. After over a year of conducting online meetings we are happy that this year's VASCERN Days will take place in person and give our members and invited stakeholders a chance to catch up!

    We are expecting over 80 participants over this 3-day event including healthcare professionals from our Healthcare Provider (HCP) Full Members and Affiliated Partners, patient advocates from the VASCERN ePAG and various stakeholders representing DG SANTE (European Commission), FAVA-Multi (The French Network for Rare Vascular Diseases)Eurordis, members of our VASCERN Registries Project teamEJP-RD, Fondation AP-HP, AP-HP Bichat Hospital and more!

    Access the full, detailed program here
  • Wed
    06
    Oct
    2021
    Fri
    08
    Oct
    2021
    Barcelona, Spain

    Due to 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 October 6-8th, 2021 in Barcelona, Spain.

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

    REGISTRATION DEADLINE - 17 May 2021

    ABSTRACT SUBMISSION DEADLINE - 17 May 2021

    PAYMENT DEADLINE - 1 June 2021

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

  • Mon
    04
    Oct
    2021

    The European Joint Programme on Rare Diseases has launched the ERN Research Training Workshops funding opportunity. The goal of the workshops is to train researchers and clinicians affiliated to ERN- Full  Members or – Affiliated Partners in relevant topics on research in rare diseases. Training themes may include innovative research methodologies, diagnostic research methodologies, interdisciplinary treatment approaches, such as gene therapy and transplantation, etc. Moreover, the workshops will be aiming to provide a cross-ERN added value.  

    The workshops will be delivered as two-day events. The costs for the workshop organization will be covered up to a limit of €25.000 (venue, administrative, audio-visual and IT facilities essential for the workshop, catering, travel and accommodation expenses of workshops participants and invited speakers, if envisaged). 

    The workshops selected for funding will be attended only by individuals affiliated to ERN institutions. Participants will be selected by the coordinator of the ERN managing institution and the workshop organizer based on pre-defined criteria. 

     Organizer's profile: 

     The applicant submitting workshop topics must fulfil one of the following conditions: 

    • Affiliated to any EJP RD beneficiary institution
    • Affiliated to an ERN Full Member
    • Affiliated to an ERN Affiliated Partner institution at the time when the application is submitted, as well as during the period of the execution of the workshop. 

    Application and more information here.

    Deadline to apply October 4th, 2021

  • Sat
    02
    Oct
    2021
    Sun
    03
    Oct
    2021
    Online

    The LGDA/LMI International Conference on Complex Lymphatic Anomalies will take place online from October 2-3rd, 2021.

    Organised by the Lymphangiomatosis & Gorham's Disease Alliance (LGDA), with help from its partners the Lymphatic Malformation Institute (LMI) and LGDA-Europe, this conference will bring together patients and their families, clinicians, and researchers from around the world to advance patient-driven solutions for complex lymphatic anomalies as part of our development of an international collaborative research network supported through our membership in the Rare As One Network.

    Who Should Attend:

    • Patients & Families
    • Physicians, Nurses, Allied Health Care Providers
    • Established Researchers & Post-docs
    • Medical & Graduate Students
    • Rare Disease Advocates
    • Others interested in vascular anomalies

     Basic Science and Clinical Topics:

    • Genetic Causes of Complex Lymphatic Anomalies
    • Preclinical Models to Study CCLA, GLA, GSD, and KLA
    • New Technologies for CLA Research
    • Vascular Anomalies Registries
    • Treatments for CLAs
    • Imaging Features & Biomarkers

    This free, two-day event has an exciting line-up of speakers, including VASCERN members Professor Miikka Vikkula (VASCA WG Chair), Professor Leo Schultze Kool (VASCA WG Co-Chair) and Professor Jochen Roessler (VASCA WG member). There will also be several "patient voice" sessions where people living with complex lymphatic anomalies share their unique journeys to diagnosis and treatment as well as their challenges and hopes for the future of research in this field. The full agenda can be seen here.

    Link to the event website here

    Register here

     

  • Thu
    30
    Sep
    2021
    Fri
    01
    Oct
    2021
    Leiden, The Netherlands

    In the context of EJP RD’s ERN Workshops, a face-to-face workshop on clinical epidemiological research for ERNs titled “Clinical Research: The Basics & Beyond” (consisting of presentations by experts in the field of epidemiology and a feedback session on the research projects of participants) is being organised by Prof. Olaf Dekkers and Prof. Frits Rosendaal of the Leiden University Medical Center.

    The in-person event will take place over two days on 30th September and 1st October 2021 at the Hotel Golden Tulip Leiden Centre, Schipholweg 3, 2316 XB Leiden, the Netherlands.

    The workshop is open by prior registration and selection to medical specialists affiliated to an ERN Full Member or Affiliated Partner institution and who have a special interest in clinical research with databasesRegistration closes on 18th June 2021, and those selected to participate from among the applicants will be informed by 9th July 2021 of their selection.

    Deadline to apply: 18th June 2021

    More information and registration here: https://www.ejprarediseases.org/event/clinical-research-with-databases-the-basics-beyond-workshop-in-clinical-epidemiological-research-for-erns/

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