• Thu
    07
    Jul
    2022
    5.00PM-6.00PMOnline

    The VASCERN MSA-WG Monthly Meeting will take place on July 11th, 2022 at 5.00 pm (Paris time).

  • Fri
    08
    Jul
    2022
    10.00AM-5.00PMOnline

    EU4Health Programme has been adopted in March 2021 with EUR 5.3 billion during 2021-27, an unprecedented level of financial commitment for a Union investment in health.

    Each year a targeted consultation is launched to seek opinion of stakeholders about current and future EU health priorities and strategic orientations and on key health needs to be addressed through EU4Health annual Work Programmes, providing inputs for reflection on the Work Programme under preparation and beyond.

    This webinar is the opportunity for participants to provide their input on the most burning health issues in the EU and how to address them.

    For more information, click here.

    You can register for this webinar here

  • Tue
    12
    Jul
    2022
    Fri
    15
    Jul
    2022
    Lyon, France

    Are you an adolescent aged from 12 to 18 interested in the themes of health, biomedical research, healthcare, and children rights?

    Are you a patient with a chronic rare disease interested in getting the skills to contribute in developing and shaping research making it more suitable for children?

    If yes, the free Paediatric expert patients training workshop organised by EJP-RD is for you! The event will take place in Lyon, France on July 12-15 at the iCAN Summit.

    The event is free and accommodation and travel costs are fully covered.

    Show your interest before July 1st!

    More information: https://www.ejprarediseases.org/expression-of-interest-to-participate-in-the-second-paediatric-expert-patients-training-workshop/

  • Mon
    18
    Jul
    2022
    5.30PM-6.30PMOnline

    The VASCERN PPL-WG Monthly Meeting will take place on July 18th, 2022 at 5.30 pm (Paris time).

  • Wed
    20
    Jul
    2022
    4.00PM-5.00PMOnline

    The VASCERN VASCA-WG Monthly Meeting will take place on July 20th, 2022 at 4.00 pm (Paris time).

  • Mon
    22
    Aug
    2022
    5.00PM-6.30PMOnline

    The VASCERN HTAD-WG Monthly Meeting will take place on August 22nd, 2022 at 5.00 pm (Paris time).

  • Sun
    28
    Aug
    2022
    Paris, France

    Registration is now open for the second international patient symposium on genetic aortic and vascular conditions, which is set for Sunday, August 28, 2022, at Le Méridien Etoile in Paris, France. Registration is free but required.

    Confirmed speakers include Dr. Juan Bowen, Mayo Clinic, Dr. Alan Braverman, Washington University in St. Louis, Dr. Scott LeMaire, and Baylor-St. Luke’s, Dr. Hal Dietz, Johns Hopkins, Dr. Kim Eagle, University of Michigan, Dr. Bart Loeys (VASCERN HTAD and MSA WG member), University of Antwerp (Belgium), and Dr. Shaine Morris, Texas Children’s Hospital.

    Medical presentations will cover diagnosis, medical and surgical treatments, and genetics related to Marfan, Loeys-Dietz, vEDS, and other genetic aortic and vascular conditions. Attendees will have an opportunity to network with the presenters and with each other.

    Please register 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

  • Wed
    07
    Sep
    2022
    Sat
    10
    Sep
    2022
    Milan, Italy

    Save the date for the European Academy of Dermatology and Venereology (EADV) conference themed Designing the Future of Dermatology and Venereology, which will take place in Milan, Italy and online from August 7th to 10th, 2022. This four-day event will include over 170 sessions, 600 speakers and a Patient Advocacy Booth.

    For more information and registration: https://eadvcongress2022.org/registration/

     

  • Wed
    14
    Sep
    2022
    Sun
    18
    Sep
    2022
    Rome, Italy

    The Ehlers-Danlos Society is delighted to announce the dates for the International Scientific Symposium on the Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorders. This will be a hybrid event with options to join in person or virtually.

    The International Consortium on Ehlers-Danlos Syndromes and Related disorders is bringing together leading experts, clinicians, and scientists in the field of the Ehlers-Danlos syndromes and hypermobility spectrum disorders for a high quality, scientific program with a focus on Translational Medicine in EDS and HSD – from Basic Science to Community.

    September 14-17 is suitable for Healthcare Professionals. September 18 is suitable for members of the EDS and HSD community, their families, and caregivers. 

    This event has been approved for up to 20.5 CME/CEU/CE Credits, which will be available for healthcare professionals to claim for sessions that are viewed LIVE.

    Early Bird Registration pricing is available until July 1, 2022. After July 1, 2022, full registration costs will apply.

    More information and registration here

  • 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
    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.

     

  • Tue
    11
    Oct
    2022
    Brussels, Belgium

    It is a great pleasure to invite you to the third edition of the Innovation Bootcamp in Rare Diseases (IBRD2022) congress in Brussels, which will be held on October 11th, 2022.

    The target audience of this event includes all professionals involved in the prevention, treatment and diagnosis of rare diseases and orphan drug research and development, including researchers, clinicians, pharma, policy makers and patient representatives.

    The program includes the following sessions:

    • Tackling delay in diagnostics
    • Newborn screening & improvement of prevention
    • The impact of patient organisations
    • Pricing of Orphan drugs and true cost of illness
    • Regulatory & access challenges in orphan drugs

    For more information and registration: https://congresscare.eventsair.com/innovation-bootcamp-in-rare-diseases-ibrd22/

  • 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/

  • 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/

  • 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.

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