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

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 genetically defined types of Ehlers-Danlos syndromes (EDS), 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 13.5 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!

In order to register for our events, you need to be logged in to a website account. Once you are logged in, you will have the ability to add tickets from our events pages to your basket and to purchase.
Please click here to log in/register for your Ehlers-Danlos Society website account. Once you have logged in, please revisit this page to purchase your tickets. Please note, you will not be redirected automatically, but can find this page under our Events section, and Upcoming Events.


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.
On Demand Recordings (Full Event): Choose Your Price
USD $ 0.00
On Demand Recordings (Community Session): Choose Your Price
USD $ 0.00

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, 

View the Event Agendas

Explore our agenda for the Genetically Defined EDS: Strategies & Solutions for Unmet Needs event.

Healthcare Professionals Event Agenda

Unable to view the PDF, view it here.

Community Session Event Agenda

Unable to view the PDF, view it here.

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 13.5AMA PRA Category 1 CreditsTM 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, Prof. Lara Bloom, Oumaima Nehaili, Stacey Simmonds, Faye Moran, Prof. Fransiska Malfait, Dr. Johannes Zschocke, Dr. Marco Castori, Dr. Chloe Agwin, Dr. Fleur van Dijk, Dr. Peter Byers, Dr. Sherene Shalhub, Jonneke van Gurp, Dr. Marlies Colman, Niamh Wilkinson, Dr. Glenda Sobey, Lisa van den Bersselaar, Dr. Delfien Syx, Robin Vroman, Margaret Warren-Perry, Ruth Nicholson, Eva Collado, Charissa Frank, Shireen Lamandé, Göran Larson, Alexander Nystrom, Dr. Chip Norris, Dr. Serwet Demirdas,  Baptiste Vierne, Lies Rombaut, Inge De Wandele, Nina Riise, Thy Thy Vanem, Marianne Mørk, Jess Bowen, Sabine Hellemans, Juliette Harris, Tammy Kamin, Claire Green, Marijn Vis, Lara Jorge, Laura Muino-Mosquera, Clare Stacey, Elaine Fox, Amanda Archer, Christel Mols, Edward Fraser, Kevin Aertgeerts, Jose Kusters.  

The following planners/presenters listed below have disclosed that they have a relevant financial relationship with an ineligible company. 

Nature of Relationship Name of Ineligible Company
Dr. Karelle Benistan Researcher Cerecare
Michael Frank Consultant ACER Therapeutics
Tomoki Kosho Other BML Inc., Life Technologies of Japan Ltd. Of Thermo Fisher Scientific Inc.
Zoltan Szekanecz Consultant, Advisor, Speaker, Researcher Pfizer, Abbvie, Gedeon Richter, Lilly, Novartis, Roche
Clair Francomano Consultant Kyani International, GOVVI, Acer Therapeutics

All of the relevant financial relationships listed for these individuals have been mitigated.

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