Genetically Defined EDS: Strategies & Solutions for Unmet Needs
Hybrid Meeting, August 30-31, 2023

In-Person Meeting Location: Monasterium PoortAckere, Ghent, Belgium

Scientific Chair
Fransiska Malfait, MD, PhD, Ghent University Belgium

Scientific Committee

  • Karelle Benistan, MD, Head of Clinic, Center for Medical Genetics, Hôpital Raymond Poincaré, France
  • Lara Bloom, President and CEO, The Ehlers-Danlos Society, Academic Affiliate Professor of Practice in Patient Engagement and Global Collaboration, Penn State College of Medicine
  • Marco Castori, MD, Chief, Division of Medical Genetics, Foundation IRCCS-Casa Sollievo della Sofferenza, Italy
  • Serwet Demirdas, MD, PhD, Coordinator/Head of Expertise Center for Ehlers-Danlos Syndrome, Erasmus MC, Netherlands
  • Alessandro Ferraris, MD, PhD, Center for Medical Genetics, San Camillo Forlanini Hospital Italy
  • Michael Frank, MD, PhD, Hôpital Européen Georges Pompidou, France
  • Zoltan Szekanecz, Professor of Rheumatology, Immunology, and Medicine, University of Debrecen, Faculty of Medicine, Hungary

Hybrid Meeting

People with genetically defined types of Ehlers-Danlos syndrome (EDS) are likely to have problems with diagnosis and lack of information about their condition. These issues decrease quality of care and often subject people to inadequate evaluation.

Genetically Defined EDS: Strategies & Solutions for Unmet Needs is a hybrid networking event that will take place in Ghent, Belgium, from August 30-31 2023, bringing together scientists, healthcare providers, patient advocate groups, and patients to discuss current knowledge on the genetic and pathophysiological basis of these conditions, classification, and strategies needed to optimize diagnosis, care, and treatment.

The aim is to strengthen and expand clinical and basic research networks with the identification of the most pertinent research questions. The meeting will combine state-of-the-art presentations, presentations by early career scientists, and group discussions. It is linked to a patient-oriented meeting in which the current knowledge on genetically defined EDS types will be presented to an international audience including patients and non-specialist clinicians.

  • Healthcare professionals are welcome to register for the two-day meeting from August 30-31.
  • Members of the EDS community, their families, and caregivers are welcome to register for the half-day patient-oriented sessions on August 31.

This event has been approved for up to 8.5 CME/CEU/CE credits for healthcare professionals to claim for sessions attended LIVE. Please note that to claim your credits, there are two steps that need to be completed within a specific timeframe. This information will be emailed, closer to the event, to relevant ticketholders. The credits can only be claimed after completing both steps. Failure to do so may result in not being able to claim credits.

Objectives of the Event 

Since the clinical picture of EDS is complex, it requires a range of experts in basic research in the fields of genetics and extracellular matrix biology, clinicians who deal with these diseases and their complications, genetic counselors, and allied health workers who are involved in the multidisciplinary management of these patients.

The focused interactions between these professionals and patient(s) (advocates) are crucial to enable constructive multidisciplinary debates focusing on the multiple clinical and research needs of the EDS types.

This networking event has four main objectives:

(1) to share knowledge on the genetically defined EDS types among healthcare professionals, researchers, and patients, taking advantage of bringing together and expanding different European and international networks involved in EDS (including participants from underrepresented countries);
(2) to develop new research hypotheses, priorities, and strategies;
(3) to encourage new interdisciplinary international collaborations; and
(4) to provide international resources for clinical and molecular diagnosis and care.

How can I watch this event?

The event is fully hybrid and can be joined in person in Ghent, Belgium, or virtually from anywhere in the world. The virtual option will be hosted via Zoom webinar.

Please select from the registration options listed below. If you have any questions please contact our events team.

Registration Options

Choose from the virtual, in-person, and add-on options below!


The numbers below include tickets for this event already in your cart. Clicking "Get Tickets" will allow you to edit any existing attendee information as well as change ticket quantities.
Healthcare Professionals Ticket - In-Person
Ages 18 and over. Ticket price includes:
  • Admission to meetings on August 30 and 31
  • Morning and afternoon refreshments, and lunch on August 30 and 31
USD $ 200.00
Healthcare Professionals Ticket - Virtual
Ticket price includes:
  • Online access to sessions on August 30 and 31
  • Lifetime on-demand access to the session recordings, available starting seven days after the event
USD $ 50.00
CME Add-On
  • Please note: The CME/CEU/CE Add-On must be purchased in conjunction with a virtual or in-person healthcare professionals ticket. This add-on alone will not grant access to the conference.
  • Claim 8.5 CME/CEU/CE credits approved by Project ECHO at the University of New Mexico, for the sessions you have attended live (either in-person or virtually).
  • USD $ 50.00
    Community Ticket - Virtual
    Ticket price includes:
    • Online access to half-day meeting on August 31
    • Lifetime on-demand access to session recordings, available starting seven days after the event
    USD $ 20.00

    Can’t attend live? Registrants get lifetime on-demand access to the event content after the event ends!

    Venue Details

    The Monasterium Poortackere is a hotel housed in a former 19th-century monastery; it is a true meeting between the past and the present.

    Monasterium PoortAckere, 
    Oude Houtlei 56, 
    9000 Ghent, 

    Sponsorship Opportunities

    Sponsorships are available for this conference, with virtual and in-person package options. Please see our sponsorship prospectus and commitment form, or contact our team directly on [email protected] to discuss sponsorship opportunities.

    In support of improving patient care, this activity has been planned and implemented by the Ehlers-Danlos Society and Project ECHO. Project ECHO® is jointly accredited by the Accreditation Council for Continuing Medical Education (ACCME), the Accreditation Council for Pharmacy Education (ACPE), and the American Nurses Credentialing Center (ANCC), to provide continuing education for the healthcare team.

    Project ECHO_Commendation

    AMA Designation Statement 

    Project ECHO® designates this live activity for a maximum of 8.5 AMA PRA Category 1 Credits™.  Physicians should claim only the credit commensurate with the extent of their participation in the activity.

    Disclosure Statement 

    Project ECHO®, in compliance with the ACCME Standards for Integrity and Independence in Accredited Continuing Education, requires that anyone who is in a position to control the content of an educational activity disclose all relevant financial relationships they have had within the last 24 months with an ineligible company.

    None of the planners and presenters for this educational activity have relevant financial relationship(s) to disclose with ineligible companies whose primary business is producing, marketing, selling, re-selling, or distributing healthcare products used by or on patients.

    Dr. Alan Hakim, Sacha Aziz, Prof. Lara Bloom, Oumaima Nehaili, Stacey Simmonds.

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