• Thu
    10
    Nov
    2022
    Fri
    11
    Nov
    2022
    Istituto Superiore di Sanità, Via Giano della Bella, 34 – Rome, Italy

    As part of the training activities proposed by EJP RD, an international course entitled “Training for patient representatives and advocates on leadership and communication skills” is a 2-day training programme organised by Istituto Superiore di Sanità (ISS) in close collaboration with EJP-RD task partners, open to patient representatives involved in the 24 European Reference Networks (ERNs), including members of the European Patients Advisory Groups (ePAGS), and other RD patient advocates.

    The in-person training will take place from November 10th – 11th at ISS in Rome, Italy.

    The training course may be adapted to an online format in case of uncertainty due to the evolution of the Covid-19 pandemic, or of other adverse conditions that might occur. In case of face-to-face delivery, the organisers have foreseen

    • hotel accommodation for all selected participants
    • 4 travel and accommodation fellowships for participants living and working in an EU-13 Country or in Turkey.

    Registration is currently open but will close on April 13th. The training is limited to 30 attendees, those chosen to participate from among the applicants will be informed by May 3rd, with a reserve list open until May 20th (if the training is delivered face-to-face) or September 9th (in case of online delivery).

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

  • Thu
    06
    Oct
    2022
    Fri
    07
    Oct
    2022
    Paris (France)

    VASCERN DAYS 2022 will be held from 6 to 7th of October 2022 in Paris, France.

    More information to come soon.

     

  • Mon
    26
    Sep
    2022
    Thu
    29
    Sep
    2022
    Istituto Superiore di Sanità (ISS) , Roma, Italia

    As part of the training activities proposed by EJP RD, the International Summer School on Rare Disease Registries and FAIRification of Data is a 5-day training programme organised by Istituto Superiore di Sanità (ISS) in close collaboration with EJP-RD task partners, aimed at the international research community, clinicians, medical specialists, registry curators, database managers, healthcare professionals and rare disease patients’ representatives.

    The in-person training will take place from September 26th – 30th at ISS in Rome, Italy. The training course may be adapted to an online format in case of uncertainty due to the evolution of the Covid-19 pandemic, or of other adverse conditions that might occur.

    The training course consists of two modules, and registration is possible for either module separately or for the course as a whole:

    • “Rare Disease Registries”, September 26th – 28th
    • “FAIRification of Data”, September 29th – 30th

    Registration is currently open but will close on April 13th. As each training module is limited to 30 attendees, those chosen to participate from among the applicants will be informed by May 3rd, with a reserve list open until May 20th (if the training is delivered face-to-face) or September 9th (in case of online delivery).

    More information and registration here: https://www.ejprarediseases.org/event/international-summer-school-on-rare-disease-registries-and-fairification-of-data/

  • Thu
    01
    Sep
    2022

    The 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 preliminary dates in 2022.

    • September 1, 2022 at 14.00 (CEST)
    • December 1, 2022 at 14.00 (CET)

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

  • Mon
    29
    Aug
    2022
    Thu
    01
    Sep
    2022
    Paris, France

    Save the date for the Marfan Foundation's Science in Paris event which will take place in Paris, France from August 29th-September 1st, 2022. This four-day meeting will feature three separate, but connected, meetings which aim to enhance collaboration and discovery to ultimately benefit patients and families. These meetings are:

    • August 29, 2022 - DEFY Foundation 5th Scientific Meeting on Vascular Ehlers-Danlos Syndrome
      Registration for this meeting is free, thanks to generous support from the DEFY Foundation
    • August 30-31, 2022 - 11th International Symposium on Marfan, Loeys-Dietz, and Related Conditions
      (Aortic Summit Poster Session)
    • September 1, 2022 7th  - GenTAC Aortic Summit

    Registration opens on April 1st, 2022.

    For more information read the event's brochure here

  • Sun
    28
    Aug
    2022
    Paris, France

    Save the Date: THE MARFAN FOUNDATION's What’s New in Genetic Aortic and Vascular Conditions - An international educational meeting for affected people and their families that was planned to take place Sunday April 24th, 2022 in Paris, France has been postponed and will now take place on Sunday August 28th, 2022.

    VASCERN members will be presenting at this event including Professor Bart Loeys (HTAD and MSA WG member).

    Registration coming soon.

  • Mon
    04
    Jul
    2022
    Tue
    05
    Jul
    2022
    Hotel Excelsior in Bari, Italy

     

    In the context of EJP RD’s ERN Workshops, a face-to-face workshop entitled “Modelling & Simulation: Research Methodologies for Small Populations in Rare Diseases” aimed at facilitating discussion and exchange of knowledge on the M&S methodologies and strategies as innovative and promising enough for facing complex multifactorial or rare diseases and conditions that require highly specialised treatments and resources is being organised by Donato Bonifazi of the Consorzio per Valutazioni Biologiche e Farmacologiche (CVBF).

    The in-person event will take place over two days on July 4th – 5th at the Hotel Excelsior in Bari, Italy.

    The workshop is open by prior registration and selection to PhD students, post-doc researchers, senior scientists, young clinicians, investigators and academics and who are employees of or affiliated to an ERN Full Member or affiliated Partner institution.

    The training workshop is free of charge and the training methodology will be based on lectures, seminars, and practical sessions, aimed at providing concrete research skills.

    Registration closes on May 10th, and those selected to participate from among the applicants will be informed by May 23rd of their selection.

    More information and registration herehttps://www.ejprarediseases.org/event/modelling-simulation-research-methodologies-for-small-populations-in-rare-diseases/

     

  • Mon
    27
    Jun
    2022
    Fri
    01
    Jul
    2022
    Online Meeting

     

    The ECRD is recognised globally as the largest, patient-led rare disease policy event in which collaborative dialogue, learning and conversation takes place, forming the groundwork to shape goal-driven rare disease policies and allow for important and innovative discussions on a national and an international level to take place.

    Leading, inspiring and engaging all stakeholders to take action, the Conference is an unrivalled opportunity to network and exchange invaluable knowledge with over 1500 stakeholders in the rare disease community – patient advocates, policy makers, researchers, clinicians, healthcare professionals, healthcare industry representatives, academics, payers, regulators and Member State representatives.

    The next ECRD will take place fully online from 27 June to 1 July 2022.

    This 11th edition follows a pivotal two-year Rare 2030 Foresight Study, supported by the European Parliament and European Commission, that guided a large-scale and multi-stakeholder reflection on rare disease policy in Europe through 2030.

    The concluding recommendation of Rare2030 was the need for a new European policy framework on rare diseases with measurable and actionable goals. Current actions at Member State level alone, or legislative changes in specific areas are not enough. We need a new European collective strategy for rare diseases to bring Member States’ commitment to rare diseases under a common umbrella and mark a step forward in the post-COVID world.

    This ECRD will be a critical opportunity for all stakeholders to consider how to transform this exhaustive review of the strategy on rare diseases into a proposal of concrete actions ultimately creating the ecosystem required to address the unmet needs and persisting inequalities across Europe.

    Poster abstracts submissions for the ECRD 2022 are now open until 31st March 2022.

    Submit your abstract here: https://www.rare-diseases.eu/posters/

    More information on: https://www.rare-diseases.eu

  • Mon
    20
    Jun
    2022
    Thu
    23
    Jun
    2022
    Liège, Belgium

    The 70th International Congress of the European Society for CardioVascular and Endovascular Surgery (ESCVS) and for the 7th International Meeting on Aortic Diseases (IMAD) will take place in Leige, Belgium from June 20-23rd, 2022.

    Call for Abstracts are open until the March 15th, 2022

    Submit your abstract to the 70th ESCVS congress here

    Submit your abstract to the 7th IMAD here

    More info here

     

  • Tue
    14
    Jun
    2022
    Wed
    15
    Jun
    2022
    Hospices Civils de Lyon in Lyon, France.

     

    In the context of EJP RD’s ERN Workshops, a face-to-face workshop entitled “Functional exploration of genetic variants in cardiac diseases” aimed at presentation of functional explorations of variants of interest identified using DrosophilaC. elegans, Zebrafish and iPSc models to understand the molecular bases of genetic diseases, in particular heart and muscle diseases, is being organised by Philippe Chevalier of the Hospices Civils de Lyon.

    The in-person event will take place over two days on June 14th – 15th at the Hospices Civils de Lyon in Lyon, France.

    The workshop is open by prior registration and selection to cardiologists, molecular biologists, post-docs, medical fellows, and PhD students and who are employees of or affiliated to an ERN Full Member or affiliated Partner institution.

    The training workshop is free of charge and consists of interactive presentations and discussions.

    Registration closes on May 1st, and those selected to participate from among the applicants will be informed by May 9th of their selection.

    More information and registration herehttps://www.ejprarediseases.org/event/ejp-rd-ern-workshop-functional-exploration-of-genetic-variants-in-cardiac-diseases/

  • Mon
    13
    Jun
    2022

    EJP RD is glad to announce today (May 2nd) the opening of the call for Research Mobility Fellowships, which aims to support PhD students, postdocs and medical doctors in training to undertake scientific visits fostering specialist research training outside their countries of residence.

    Deadline: 13 June

    The exchange can be carried out (1) within the same ERN (Full Members and Affiliated Partners), (2) between different ERNs (Full Members and Affiliated Partners), or (3) between ERN Full Members / Affiliated Partners and non-ERN institutions.

    Either home or host (secondment) institution must be a Full Member or Affiliated Partner of an ERN at the time when the application is submitted, as well as during the proposed period of the training stay.

    Successful applicants should acquire new competences and knowledge related to their research on rare diseases, with a defined research plan and demonstrable benefit to the ERN of the home and/or host institution.

    The research mobility fellowships are meant to cover stays of 4 weeks to 6 months duration.

    More information here.

  • Thu
    09
    Jun
    2022
    Fri
    10
    Jun
    2022
    Lyon, France

     

    In the context of EJP RD’s ERN Workshops, a face-to-face workshop on “Translational research on bone impairment in rare diseases” aimed at giving an update on translational research on bone impairment in rare diseases and bringing together experts and trainees to facilitate collaborations is being organised by Justine Bacchetta of the Faculty of Medicine of Lyon.

    The in-person event will take place over two days on June 9th – 10th at the Faculty of Medicine of Lyon in Lyon, France.

    The workshop is open by prior registration and selection to senior scientists, senior physicians, postdocs, medical fellows, and PhD students who are employees of or affiliated to an ERN Full Member or affiliated Partner institution. 

    The training workshop is free of charge and consists of interactive presentations and discussions on different areas of interest. On the second day, a “meet the experts” session will encourage small group talks, exchanges, and networking.

    Registration closes on March 27th, and those selected to participate from among the applicants will be informed by April 4th of their selection.

    More information and registration here: https://www.ejprarediseases.org/event/ejp-rd-ern-workshop-translational-research-on-bone-impairment-in-rare-diseases/

  • Fri
    03
    Jun
    2022

    The Orphan Disease Center is accepting applications for the CLA Young Investigator Award, a one-year grant to support PhDs, postdocs, medical doctors, and other early career researchers to conduct research in complex lymphatic anomalies such as Gorham Stout Disease (GSD), Generalized Lymphatic Anomaly (GLA), Kaposiform Lymphangiomatosis (KLA) and Central Conducting Lymphatic Anomaly (CCLA). International applicants are invited to submit proposals in any field of lymphatic research.

    Deadline: 3 June

    The awardee will conduct the proposed research project under the supervision of a scientific mentor. There are up to two awards available.

    Applicants must have a PhD, MD, or MD/PhD or equivalent degree, and must not hold a position higher than Instructor

    More information here

  • Fri
    20
    May
    2022
    Lyon, France

    HHT working group members will meet at hopital "femme mère enfant"  Lyon, France, for the annual face to face meeting.

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