• Mon
    10
    Jan
    2022
    5.00PM-6.00PMWEBEX

    The VASCERN MSA-WG Monthly Meeting will be taking place on January 10th, 2022 at 5.00 pm (Paris time).

  • Tue
    11
    Jan
    2022
    10.00AM-11.30AMZOOM WEBINAR

    The VASCERN ePAG Monthly Meeting will take place on  January 11th, 2022 from 10 am to 11:30 am (Paris time).

  • Mon
    17
    Jan
    2022
    5.30PM-6.30PMWEBEX

    The VASCERN PPL-WG Monthly Meeting will take place on January 17th, 2022 at 5:30 pm (Paris time).

  • Wed
    19
    Jan
    2022
    4.00PM-5.00PMWEBEX

    The VASCERN VASCA-WG Monthly Meeting will take place on January 19 th , 2022 at 4:00 pm (Paris time)

  • Thu
    20
    Jan
    2022
    5:00PM-6:00PM (CET)Zoom Webinar

    VASCERN will hold a webinar on Thursday January 20th, 2022 from 5pm to 6pm (CET) entitled: Diagnostic and Management Pathway for Venous Malformations with Professor Laurence BOON, plastic and reconstructive surgeon from Cliniques universitaires Saint-Luc, Brussels, Belgium.

    This will be the the third of a series of four webinars exploring the Patient (Diagnostic and Management) Pathways created by the Vascular Anomalies Working Group (VASCA WG).

    This webinar, that will consist of a scientific presentation followed by a question and answer session, will be primarily directed towards physicians who would like to learn more about these pathways in order to improve their knowledge on these rare vascular anomalies – but all interested participants are welcome to attend!

    Register here
  • Sat
    22
    Jan
    2022
    8:30AM-17:00PMOnline

    Save the date: The Marfan Foundation's Spanish Marfan, Loeys-Dietz and VEDS summit (CUMBRE DE LA FUNDACIÓN MARFAN: Información educativa sobre Marfan, Loeys-Dietz, VEDS y condiciones relacionadas para pacientes y familias) will take place online on Saturday, January 22nd, 2022 from 8:30AM-5PM.

    VASCERN is proud to be Community Partner of this event. VASCERN members from the Heritable Thoracic Aortic Disease (HTAD WG) Dr. Arturo EVANGELISTA, from Hospital Universitari Vall d'Hebron in Barcelona Spain, and Dr. Laura MUINO MOSQUERA, from Ghent University Hospital in Ghent, Belgium, will be presenters at this event, which will be entirely in Spanish.

    Learn more and REGISTER HERE

    See the save the date flyer in Spanish here

     

  • Mon
    24
    Jan
    2022
    5.00PM-6.30-PMWEBEX

    The VASCERN HTAD-WG Monthly Meeting will take place on January 24th, 2022 at 5 pm (Paris time).

  • Fri
    28
    Jan
    2022
    8.00AM-9.00AMWEBEX

    The VASCERN HHT-WG Monthly Meeting will take place on January 28th 2022 at 8.00 AM (Paris time).

  • Tue
    01
    Feb
    2022
    6:00PM-7:00PM (CET)Zoom Webinar

    VASCERN will hold a webinar on Tuesday February 1st, 2022 from 6-7 PM (CET) entitled: Diagnostic and Management Pathway for Capillary Malformations with Dr. Eulalia BASELGA TORRES, Pediatric Dermatologist from Hospital Sant Joan De Déu, Barcelona, Spain.

    This will be the the fourth and final of four webinars exploring the Patient (Diagnostic and Management) Pathways created by the Vascular Anomalies Working Group (VASCA WG).

    This webinar, that will consist of a scientific presentation followed by a question and answer session, will be primarily directed towards physicians who would like to learn more about these pathways in order to improve their knowledge on these rare vascular anomalies – but all interested participants are welcome to attend!

    Register here
  • Tue
    08
    Feb
    2022
    10.00AM-11.30AMZOOM

    The VASCERN ePAG Monthly Meeting will be taking place on February 8th, 2022 from 10 am to 11:30 am (Paris time).

  • Tue
    08
    Feb
    2022
    6:00PM-7:30PM (CET)Online

    The eleventh edition of the Black Pearl Awards will take place online on Tuesday, February 8th, 2022 from 18:00 until 19:30 CET and will bring together persons living with a rare disease, patient advocates, policy makers, scientists, healthcare professionals, industry representatives, and more.

    This event celebrates the inspirational qualities of people living with a rare disease along with those who go that extra mile to make a difference to their lives. VASCERN is proud to be an official Outreach Partner of this special event.

    Registration for the Online Ceremony is now open! Register for free here

    More information on the event page here

  • Thu
    10
    Feb
    2022
    Fri
    11
    Feb
    2022
    Online

     

    On 10-11 February 2022, ERN GENTURIS, the European Reference Network on Genetic Tumour Risk Syndromes, will celebrate its 5-year anniversary with a free online conference.

    The conference will feature updates on the ERN GENTURIS tumour predisposition syndromes, reports on special ERN GENTURIS projects and patient perspectives. It will also include a half-day introductory educational session specially aimed at general practitioners.

    You can register for the conference via:     genturis2022.eu.

    Programme here: ERN_GENTURIS_conference_2022_programme 

  • Thu
    10
    Feb
    2022
    5.30PM-6.30PMWEBEX

    The VASCERN NEUROVASC-WG Monthly Meeting will take place on February 10th, 2022 at 5.30 pm (Paris time)

  • Mon
    14
    Feb
    2022
    5.00PM-6.00PMWEBEX

    The VASCERN MSA-WG Monthly Meeting will be taking place on February 14th, 2022 at 5 pm (Paris time).

  • Wed
    16
    Feb
    2022
    The European Joint Programme on Rare Diseases announced on December 14th 2021 the official launch of the Joint Transnational Call 2022, 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.
    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
     
    TopicDevelopment of new analytic tools and pathways to accelerate diagnosis and facilitate diagnostic monitoring of rare diseases
    16 February: Pre-proposal submission deadline
  • Wed
    16
    Feb
    2022
    4.00PM-5.00PMWEBEX

    The VASCERN VASCA-WG Monthly Meeting will take place on February 16 th , 2022 at 4:00 pm (Paris time)

  • Mon
    21
    Feb
    2022
    5.30PM-6.30PMWEBEX

    The VASCERN PPL-WG Monthly Meeting will take place on February 21st, 2021 at 5:30 pm (Paris time).

  • Thu
    24
    Feb
    2022
    5:00PM-6:00PM (CET)Zoom Webinar

    VASCERN will hold a webinar on Thursday February 24th, 2022 from 5pm to 6pm (CET) entitled: VASCERN Webinar: Aortic surgery in Marfan syndrome (and other HTADs): What can patients do before and after surgery to improve the outcome and what to expect after surgery. 

    Presenters include Professor Klaus KALLENBACH, cardiac surgeon from Centre Hospitalier de Luxembourg, Luxembourg (Affiliated Partner member) and members of the Heritable Thoracic Aortic Diseases Working Group (HTAD WG), and Margit ASCHENBRENNER, Patient Advocate for the HTAD ePAG (Marfan Initiative Österreich).

    This webinar will consist of a scientific presentation followed by a question and answer session with questions collected from the HTAD patient community. It is therefore directed towards patients with Marfan syndrome  and other HTADs, but open to all interested.

    Register here
  • Fri
    25
    Feb
    2022
    8.00AM-9.00AMWEBEX

    The VASCERN HHT-WG Monthly Meeting will take place on February 25th 2022 at 8.00 AM (Paris time).

  • Mon
    28
    Feb
    2022

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

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

  • Mon
    28
    Feb
    2022
    5.00PM-6.30PMWEBEX

    The VASCERN HTAD-WG Monthly Meeting will take place on February 28th, 2022 at 5.00 pm (Paris time).

  • Fri
    04
    Mar
    2022
    Sat
    05
    Mar
    2022
    University Hospital Nice, Pasteur 2 Hospital – Galet, Nice, France (hybrid event: on site and by videoconference)

    In the context of EJP RD’s ERN Workshops, a hybrid workshop on “contemporary outcome measures in neuromuscular diseases aimed at understanding the advancement of technologies with digital outcome measures in neuromuscular diseases is being organised by Prof. Sabrina Sacconi of University Hospital Nice.The hybrid event (in-person on site and online by videoconference) will take place over two days on:

    March 4th – 5th, 2022 at the University Hospital Nice, Pasteur 2 Hospital in Galet, Nice, France.The workshop is open by prior registration and selection to different target groups, especially those who want to deepen their knowledge in clinical outcomes measures and innovative digital outcomes, consisting of researchers and clinicians affiliated to an ERN Full Member or Affiliated Partner Institution, physiotherapists and students.
    The training workshop is free of charge. The workshop will consist of both presentations by experts in the field of neuromuscular diseases as well as interactive panel discussions and quiz sessions to train participants in performing and interpreting various outcome measures.
    Registration closes on January 10th, 2022 and those selected to participate from among the applicants will be informed by January 14th, 2022 of their selection.


    More information and registration here: 
    https://www.ejprarediseases.org/event/contemporary-outcome-measures-in-neuromuscular-diseases/

  • Tue
    08
    Mar
    2022
    10.00AM-11.30AMZOOM Meeting

    The VASCERN ePAG Monthly Meeting will take place on  March 8th, 2022 from 10 am to 11:30 am (Paris time).

  • Thu
    10
    Mar
    2022
    5.30PM-6.30PMWEBEX

    The VASCERN NEUROVASC-WG Monthly Meeting will take place on March 10th, 2022 at 5.30 pm (Paris time)

  • Mon
    14
    Mar
    2022
    5.00PM-6.00PMWEBEX

    The VASCERN MSA-WG Monthly Meeting will be taking place on March 14th, 2022 at 5 pm (Paris time).

  • Wed
    16
    Mar
    2022
    4.00-5.00PMWEBEX

    The VASCERN VASCA-WG Monthly Meeting will take place on March 16 th , 2022 at 4:00 pm (Paris time)

  • Mon
    21
    Mar
    2022
    5.30PM-6.30PMWEBEX

    The VASCERN PPL-WG Monthly Meeting will take place on March 21st, 2021 at 5:30 pm (Paris time).

  • Wed
    23
    Mar
    2022

    The ERN Research Training Workshops funding opportunity is now open for applications until April 25th. 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 topics, 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. 

    Application, organiser’s profile, and more: https://www.ejprarediseases.org/ern-research-training-workshop/ 

     

  • Fri
    25
    Mar
    2022
    8.00AM-9.00AMWEBEX

    The VASCERN HHT-WG Monthly Meeting will take place on March 25th 2022 at 8.00 AM (Paris time).

  • Mon
    28
    Mar
    2022
    5.00PM-6.00PM

    The VASCERN HTAD-WG Monthly Meeting will take place on March 28th, 2022 at 5.00 pm (Paris time).

  • Wed
    30
    Mar
    2022
    5:30PM-6:30PMZoom

    VASCERN will hold a webinar on Wednesday March 30th, 2022 from 5:30pm to 6:30pm (CET) entitled: HHT and nosebleeds.

    Presenters include  members of the Hereditary Haemorrhagic Telangiectasia Working Group (HHT-WG):Professor Anette Kjeldsen, Dr. Freya Droege, Dr. Ruben Hermann, Professor Urban Geisthoff, Claudia Crocione (ePAG Co-Chair for HHT) and Christina Grabowski (ePAG Deputy Co-Chair for HHT).

    This webinar will consist of a scientific presentation followed by a question and answer session. It is directed towards patients with Hereditary Haemorrhagic Telangiectasia (HHT), but open to all interested.

    Register here
  • Thu
    31
    Mar
    2022
    Fri
    01
    Apr
    2022
    Centre Hospitalier Universitaire de Rennes in Rennes, France

     

    In the context of EJP RD’s ERN Workshops, an in-person workshop titled "Trans-ERN Working Group for Spina Bifida (Spinal Dysraphism): Workshop for future research on innovative diagnostics and interdisciplinary treatment" aimed at sharing participants' expertise on research in different areas of spinal dysraphism and opening the way to new research projects is being organised by Centre de Référence Spina Bifida – Dysraphismes C-MAVEM, Centre Hospitalier Universitaire de Rennes.

    The face-to-face event (in-person on site) will take place over two days on March 31st – April 1st, 2022 at the Centre Hospitalier Universitaire de Rennes in Rennes, France.

    The workshop is open by prior registration and selection to geneticists, fetal medicine experts, neurosurgeons, rehabilitation medicine specialists, pediatric and adult urologists, pediatricians who are employees of or affiliated to an ERN-Full Member or affiliated Partner institution. 

    The training workshop is free of charge. The workshop will consist of interactive presentations and discussions on different areas of interest.

    Registration closes on January 28th, 2022 and those selected to participate from among the applicants will be informed by February 15th, 2022 of their selection.

    More information and registration here: https://www.ejprarediseases.org/event/trans-ern-working-group-for-spina-bifida-spinal-dysraphism-workshop-for-future-research-on-innovative-diagnostics-and-interdisciplinary-treatment/

     

  • Wed
    06
    Apr
    2022
    8.00AM-5.00PMBRUSSELS BELGIUM

    VASCERN's VASCA will have a face-to-face meeting in Brussels, Belgium.

  • Thu
    07
    Apr
    2022
    5.00PM-6.00PMWEBEX

    The VASCERN MSA-WG Monthly Meeting will take place on April 7h, 2022 at 5.00 pm (Paris time).

  • Mon
    11
    Apr
    2022
    Wed
    13
    Apr
    2022
    Online Meeting

    As part of the training activities proposed by EJP RD, an online 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 online event will take place over three days from on April 11th – 13th.
    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 March 6th.
    More information and registration here: https://www.ejprarediseases.org/event/training-on-strategies-to-foster-solutions-of-undiagnosed-rare-disease-cases-2/

  • Tue
    12
    Apr
    2022
    10.00AM-11.30AMZOOM Meeting

    The VASCERN ePAG Monthly Meeting will be taking place on April 12th 2022 from 10 am to 11:30 am (Paris time).

  • Thu
    14
    Apr
    2022
    5.30PM-6.30PMWEBEX

    The VASCERN NEUROVASC-WG Monthly Meeting will take place on April 14th, 2022 at 5.30 pm (Paris time).

  • Mon
    18
    Apr
    2022
    Sun
    03
    Jul
    2022
    Online

    The MOOC (Massive Open Online Course) "Diagnosing Rare Diseases: from the Clinic to Research and back" co-developed by EJP RD, ERN IthacaERN GENTURIS and the French Foundation for Rare Diseases is open continuously for enrollment

    We specifically encourage medical and biomedical science students to register and follow the MOOC. 

    Facilitation will be guaranteed till July 3rd, 2022 by the mentoring team.

    Registration is free and open at this link.

    You can check the syllabus here.

     

  • Mon
    18
    Apr
    2022
    5.30PM-6.30PMWEBEX

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

  • Wed
    20
    Apr
    2022
    4.00PM-5.00PMWEBEX

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

  • Fri
    22
    Apr
    2022
    8.00AM-9.00AMWEBEX

    The VASCERN HHT-WG Monthly Meeting will take place on April 22nd, 2022 at 8.00 am (Paris time).

  • Mon
    25
    Apr
    2022

    VASCERN's HTAD WG will have a face-to-face meeting in Paris, France

  • Thu
    28
    Apr
    2022
    Mon
    02
    May
    2022
    BORGO SAN LUIGI, MONTERIGGIONI, ITALY

     

    Montalcino Aortic Consortium

    The Montalcino Aortic Consortium seeks to improve clinical outcomes of individuals with
    heritable thoracic aortic disease through this large international collaboration of medical
    professionals. The goal of this meeting is to define gene-based treatment guidelines from
    MAC achievements so far and prioritize research questions, using the infrastructure of
    MAC, to be addressed by the consortium over the next few years.

    https://www.montalcinoaorticconsortium.org/

  • Thu
    28
    Apr
    2022
    6.00PM-7.30PMONLINE WEBINAR

    C4c is hosting an online webinar on 28th April from 6pm to 7:30 pm CET.

    This webinar is open to all patients and patient representatives who are interested in finding out more about the c4c project and how to get involved in it!

    To attend this webinar – register here!

    The main objective of this webinar is to explain how patients have been engaged within the c4c project, further opportunities for engagement, and to share experiences and feedback with the participants.

    To find out more about the work c4c is doing to involve patients click here.

    The webinar will be in English and will be recorded and published on the c4c website.

  • Wed
    04
    May
    2022
    Gliwice, Poland

    In the context of EJP RD’s ERN Workshops, a face-to-face workshop on “Endocrine cancer: A challenge in adults and children” aimed at giving an update on the molecular background and clinical management of rare endocrine malignancies is being organised by Prof. Barbara Jarzab of the M. Sklodowska-Curie National Research Institute.

    The in-person event will take place on May 4th, 2022 at the M. Sklodowska-Curie National Research Institute in Gliwice, Poland.

    The workshop is open by prior registration and selection to endocrinologists, oncologists, surgeons, radiotherapists, internists and pediatricians, pathologists, radiologists, nuclear medicine specialists who are employees of affiliated to an ERN Full Member or affiliated Partner institution
    The training workshop is free of charge.  Travel and hotel expenses will be reimbursed for all selected (max 20) ERN participants. Lunch and dinner will be provided on site for all participants.

    Registration closes on January 28th, 2022 and those selected to participate from among the applicants will be informed by February 28th, 2022 of their selection.

    More information and registration here: https://www.ejprarediseases.org/event/endocrine-cancer-a-challenge-in-adults-and-children/

  • Thu
    05
    May
    2022
    WEBEX

    VASCERN's MSA working group  will have a full day of Webex meeting.

  • Fri
    06
    May
    2022
    4.00PM-6.30PMONLINE MEETING

    As part of the EJP RD Training series, an advanced-level training webinar on the topic “Composite endpoints including patient relevant endpoints (Quality of Life)” aimed at introducing the generalized pairwise comparison ideas and concepts as well as demonstrating its benefit in small sample trials, more particularly in including patient relevant endpoints, such as quality of life (QoL), is being organized by Universitaetsklinikum Aachen (Germany), Istituto Ortopedico Rizzoli IRCCS (Italy) and Assistance Publique Hôpitaux de Paris (France).

    The training webinar will be held on May 6th from 16.00 – 18.30 CET.

    The training consists of two parts: a 1.5-hour training in relatively recent statistical inference with the flexible class of generalized pairwise comparison tests for multiple endpoints, followed by 1 hour of panel discussion with experts from regulatory, pharma-industrial, academic, and clinical fields. The event is open to the international research community, clinicians, medical specialists, healthcare professionals and advocacy patient groups with knowledge of rare disease Clinical Trials.

    The training is free, and registration is mandatory. Registration closes on May 2nd.

    For more information and registration: https://www.ejprarediseases.org/event/composite-endpoints-including-patient-relevant-endpoints-quality-of-life/

  • Tue
    10
    May
    2022
    Fri
    13
    May
    2022
    Vancouver, B.C.

    The International Society for the Study of Vascular Anomalies (ISSVA) will be hosting the ISSVA World Congress 2022 (formerly the Workshop) from May 10-13th 2022 in Vancouver, Canada.

    The ISSVA World Congress 2022 will provide the opportunity to learn through a multi-disciplinary approach and will be attended by a wide array of specialists such as intervention radiologists, dermatologists, plastic surgeons, ENT surgeons, pediatricians, pediatric surgeons, oncologists, pathologists... and more! As usual, many members of the Vascular Anomalies (VASCA) WG will be in attendance at this international event.

    More information here

     

  • Thu
    12
    May
    2022
    5.30PM-6.30PMWEBEX

    The VASCERN NEUROVASC-WG Monthly Meeting will take place on May 12th, 2022 at 5.30 pm (Paris time)

  • Sat
    14
    May
    2022
    virtual

    Marfan Foundation

     

    It’s a magical feeling, from the United States across the sea in Europe, down under in Australia and beyond - we are all connected. This is our 3rd Global Walk for Victory, and we are stronger and more united then ever!

    We hope you will join our virtual international program which brings the Marfan, Loeys-Dietz (LDS), Vascular Ehlers-Danlos (VEDS), and related conditions community together across the globe. The support of Walk participants and donors helps to ensure a better life for everyone with genetic aortic and vascular conditions.

    This high-energy virtual party will include interactive games, guest speakers, opportunities to connect with community members, and more! So, get your team registered, invite your friends and family to support the mission of The Marfan Foundation by donating to your page, and get ready to celebrate with us on May 14!

    Thank you to our Walk Leadership!
    Medical Chairs:
    North America Chair – Dr. Mary Sheppard, UK Healthcare (Kentucky)
    European Chair – Dr. Guillaume Jondeau Hopital Bichat (Paris)
    Community Chair:
    Betcy Mattarita

    For more information, contact Meredith Mischner at mmischner@marfan.org.

    Register today :  https://give.marfan.org/event/2022-global-virtual-walk-for-victory/e374568

  • 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.

  • 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

  • Wed
    08
    Jun
    2022
    Brussels, Belgium

    The VASCERN PPL-WG will have a face-to-face meeting in Brussels, Belgium

  • 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
    10
    Jun
    2022
    Paris, France

    The VASCERN NEUROVASC-WG will have a face-to-face meeting in Paris, France

  • 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.

  • 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/

  • Tue
    14
    Jun
    2022
    Wed
    15
    Jun
    2022
    Online

    University Medical Centre Groningen (UMCG) and Fondazione Telethon (FTELE) along with other EJP RD partners are organizing an EJP RD Training Workshop titled “Genetic Biobanks for Rare Disease Research” targeted at biomedical researchers, medical professionals, and biobank managers who want to learn about genetic biobanks in rare disease research.

    The training workshop will take place over two days on June 14th – 15th from 09.00 – 17.00 CET.

    The training workshop is organized as a series of lectures presented by experts in the specific topics. The first day of the training will focus on Data Management and Tools. The second day will cover the ELSI aspects biobankingEuropean privacy regulations (GDPR)ELSI considerations in genetics, and the stainability of biobanks including a discussion on public-private collaborations.

    Registration for the workshop is free but mandatory and open to the international research community, clinicians, medical specialists, RD biobank managers, healthcare professionals and RD patient representatives.

    Registration closes on May 29th, and those selected to participate from among the applicants will be informed of their selection on June 2nd.

    More information and registration here: https://www.ejprarediseases.org/event/genetic-biobanks-for-rare-disease-research-2/

  • 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

     

  • Mon
    27
    Jun
    2022

    The European Commission is pleased to inform you that the 2023 Stakeholders’ targeted consultation on EU4Health priorities, strategic orientation, and needs is now open and will run until 27 June 2022.

    This targeted consultation is intended to seek the opinion of stakeholders including the wide European health community such as hospitals, organizations representing patients, civil society, and other parties active in public health and social issues; healthcare professionals and healthcare providers; researchers, academia, and experts networks; businesses and their associations; and Member States authorities, 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 2023 EU4Health Work Programme and beyond.

    You can find more information on the consultation here.

    Fill the survey here

  • 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
    27
    Jun
    2022
    5.00PM-6.30PMOnline

    The VASCERN HTAD-WG Monthly Meeting will take place on June 27th, 2022 at 5.00 pm (Paris time).

  • Thu
    30
    Jun
    2022
    10.00AM-12.30PMOnline

    We are happy to invite you to take part in a workshop addressing “Ethics and regulatory considerations for ERN Data Access Committee members”.

    This workshop is jointly organised by ERICA and EJP RD and will take place online on 30th June from 10 am to 12:30 pm.

    It primarily aims to train the members of the ERNs Data Access Committee members on the legal and ethical aspects to consider when examining an incoming data access request. All other interested stakeholders are welcome to join.

    For more information and registration: https://www.ejprarediseases.org/ejp-rd-erica-workshop-ethics-and-regulatory-considerations-for-ern-data-access-committee-members/

  • Fri
    01
    Jul
    2022
    8.00AM-9.00AMOnline

    The VASCERN HHT-WG Monthly Meeting will take place on July 1st, 2022 at 8.00 am (Paris time).

  • Mon
    04
    Jul
    2022
    Tue
    05
    Jul
    2022
    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 has been extended to June 17th, 2022.

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

     

  • Tue
    05
    Jul
    2022
    5:30PM-6.30PMOnline

    The VASCERN NEUROVASC-WG Monthly Meeting will take place on July 5th, 2022 at 5.30 pm (Paris time).

  • 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).

  • Sun
    14
    Aug
    2022

    IRDiRC has four Scientific Committees, one each for Diagnostics, Therapies, Interdisciplinary, and Regulatory aspects of rare diseases research. The Diagnostic Scientific Committee (DSC) identifies current and future bottlenecks to rare disease gene discovery, addresses challenges and roadblocks in rare disease diagnosis, and collaborates with international partners to develop tools and resources to facilitate genomic data discovery, analyses and sharing.

    IRDiRC is currently looking for clinicians and experts in genetics, genomics, bioinformatics, molecular diagnostics, and biochemistry who can commit to quarterly teleconferences, a yearly face-to-face meeting, and regular committee activities, including email correspondence.

    Interested candidates are invited to send their resume, biosketch and letter of motivation to scisec-irdirc@ejprarediseases.org before the 14th of August 2022.

    More information about the The Diagnostic Scientific Committee (DSC) : https://irdirc.org/dsc/

  • Wed
    17
    Aug
    2022
    4.00PM-5.00PMOnline

    The VASCERN VASCA-WG Monthly Meeting will take place on August 17th, 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).

  • Fri
    26
    Aug
    2022
    8.00AM-9.00AMOnline

    The VASCERN HHT-WG Monthly Meeting will take place on August 26th, 2022 at 8.00 am (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

  • 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.

  • 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
    29
    Sep
    2022
    Sun
    02
    Oct
    2022
    Cascais, Portugal

    CureHHT would like to invite you to join us in Estoril, Cascais, Portugal for the 14th HHT International Scientific Conference. We will host a Welcome Reception on September 28th and scientific sessions on September 29-October 2nd, 2022.  The program this year will feature several outstanding keynote speakers (including Dr. Hans-Jurgen Mager), multiple cross-disciplinary sessions, extensive opportunities for presenting and viewing posters and for interdisciplinary discussions.

    This normally biennial meeting is well over-due. It is the must-attend event for both established and early-stage researchers, as well as clinicians experienced in treating HHT, and those just entering the field of HHT. Basic research is the engine that drives discovery of new drugs and therapies, but it relies on constant input and feedback from clinicians. Results of clinical research provide new insights in the best ways to diagnose and treat HHT.

    The meeting location is situated in the heart of the Portuguese Riviera, overlooking the bays of Estoril and Cascais, close to stunning beaches, historic fishing villages and forts. It is only a 10-minute train journey to the heart of Lisbon, one of the most charismatic and vibrant cities of Europe, and a 15-minute drive to the cooling hills of Serra de Sintra that offers picturesque landscapes and whimsical palaces and gardens. The 5-star Hotel Cascais Miragem Health & Spa offers guests an unmatched combination of culture and beauty. This is a great place for kids and families so bring everyone. The beauty and tranquility of your surroundings will only enhance the 3 and ½ days of collegial and stimulating HHT talks and poster sessions that we have planned for you!

    More information and registration: http://science.hhtconference.org/

  • 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/

  • Wed
    19
    Oct
    2022
    Fri
    21
    Oct
    2022
    Online

    As part of the training activities proposed by the EJP RD, a 3-day training course titled “Quality assurance, variant interpretation and data management in the NGS diagnostics era” is being organised by Universitätsklinikum Tübingen, in close collaboration with EJP-RD task partners, aimed the international research community: clinicians, medical specialist, laboratory scientists (EBMG-registered), junior laboratory scientists, clinical geneticists, policy makers and assessors for laboratory accreditation, and patient representatives with a basic knowledge in biology or medicine.

    The fully online event will take place from October 19th – 21th.

    Registration is currently open until August, 15th 2022. As the training course is limited to 30 attendees, respondents who are not selected will be kept on a waiting list until 7 October 2022.

    More information and registration here: https://www.ejprarediseases.org/event/quality-assurance-variant-interpretation-and-data-management-in-the-ngs-diagnostics-era-3/

  • Fri
    28
    Oct
    2022
    Sat
    29
    Oct
    2022
    Netherlands

    SAVE THE DATE! The CMTC-OVM (Cutis Marmorata Telangiectatica Congenita and Other Vascular Malformations) association invites you to their Global members’ conference & 25th anniversary that will take place on 28 – 29 October 2022 in the Netherlands.

    More information and registration here.

  • Sat
    05
    Nov
    2022
    Charenton-le-Pont, France

    In the context of EJP RD’s ERN Workshops, a face-to-face workshop entitled “Rhabdoid tumors in clinic and research: From basic biology to the patient bed” aimed at discussing the current clinical standard of treatment in rhabdoid tumors, as well as the controversies in the rhabdoid tumors regimen is being organized by Dr. Pascal Johann of the Universitätsklinikum Augsburg.

    The in-person event will take place on November 5th, 2022 in the Hotel Novotel at 3-5, Place des Marseillais in Charenton-le-Pont.

    Registration is open here, and closes on July 31st. Those selected to participate from among the applicants will be informed by August 15th of their selection.

    The workshop is open by prior registration and selection to both PhD or Master students from the life sciences and MD students or residents, although advanced-stage PIs or physicians with more extensive clinical experience are invited to join. All participants must be 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 working in small groups, each one dedicated to a specific question in rhabdoid tumor research and “inverted classroom learning”, wherein the organisors will provide publications prior to the workshop and expect participants to have gained an overview on the topics which will be discussed beforehand. In the second part of the workshop, summaries from each working group will be presented (peer-peer learning), in order for all participants to discern take home messages for each of the major topics.

    More information herehttps://www.ejprarediseases.org/event/rhabdoid-tumors-in-clinic-and-research-from-basic-biology-to-the-patient-bed/

  • 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/

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