The Ehlers-Danlos Society is delighted to be hosting the Precision Medicine for Genetically Defined Ehlers-Danlos Syndromes event, taking place on September 3-4, 2026, in Ghent, Belgium. This is a hybrid event that can be viewed from anywhere in the world, in over 60+ languages.

This event is for healthcare professionals, researchers, scientists, patient representatives, and policy-makers alongside representatives from pharmaceutical, biotechnology, diagnostics, digital health, and related healthcare organisations.

Register to join us

About the Ehlers-Danlos Syndromes

The Ehlers-Danlos Syndromes (EDS) are a group of rare, heritable connective tissue disorders that affect the body in many ways. While most types of EDS are linked to genetic changes, the mechanisms that link these changes to phenotypic outcomes remain poorly understood.

Individuals with the same diagnosis can present differently, presenting significant challenges for diagnosis, treatment, and management.

The Hope for Precision Medicine

Traditional “one-size-fits-all” approaches do not address the complexity experienced by those with the Ehlers-Danlos syndromes. Precision medicine—care tailored to genetic, biological, and personal factors—offers hope for more effective management strategies.

For conditions such as the Ehlers-Danlos syndromes, advancing precision medicine requires foundational research, and international collaboration is crucial.

Aims of this event

This global networking event will bring together clinicians, established and early-career scientists, patient representatives, policymakers, and other key stakeholders to advance collective understanding and action in genetically defined types of EDS.

Through multidisciplinary collaboration and elevating patient voices to reflect lived experience, we aim to create a shared roadmap for advancing precision medicine in EDS.

  • Who can attend this event?

    This event is for healthcare professionals, researchers, scientists, patient representatives, and policy-makers alongside representatives from pharmaceutical, biotechnology, diagnostics, digital health, and related healthcare organisations

    The multidisciplinary nature of this event will provide an opportunity to speak with specialists from many fields from around the world.

  • How can I watch this event?

    This event will be hosted in person in Ghent, Belgium, and is a hybrid event. Attendees can join in person or virtually on Zoom webinar, and are welcome to join from anywhere in the world. The event will take place from 8:45 am – 5:00 pm Central European Time (CET). Please use worldtimebuddy.com to find the event time in your location. If you have any questions, please contact our events team.

  • Venue Details

    This event will be hosted in Ghent, Belgium at the Hotel Monasterium Poortackere, Oude Houtlei 56, 9000 Ghent.

Agenda

Thursday September 3
08:15–08:30 Webinar opens for virtual attendees to join
8:30–8:40 Welcome to the event – Fransiska Malfait, Peter Byers
Session 1 Classical EDS (cEDS)—COL5A1, COL5A2
8:40–8:45 Welcome to Session 1 – Fransiska Malfait
8:45–9:00 Classical EDS and collagen V defects: natural Hx and approaches to personalized therapy – Fransiska Malfait
9:00–9:10 Mechanisms of pathogenesis and variations in expression level of different alleles – Delfien Syx
9:10–9:30 Wound healing and Type V collagen – Arjun Deb
9:30–9:45 Pain and Type V Collagen
9:45–9:55 Vascular disease in cEDS: the French experience – Karelle Benistan
9:55–10:05 Vascular disease in cEDS: a literature review – Serwet Demirdas
10:05–10:15 Collagen V defects and multifocal fibromuscular dysplasia
10:15–10:25 Q&A
10:25 – 10:55 Break
Session 2 Vascular EDS (vEDS)—COL3A1
10:55–11:00 Welcome to Session 2 – Michael Frank
11:00–11:15 COL3A1 Variants: Implications for Risk Stratification, Clinical Outcomes, and Management Strategies – Michael Frank
11:15–11:30 Features of Vascular Ehlers-Danlos Syndrome among Biobank Participants Harboring Predicted High-Risk COL3A1 Genotypes – Bruce Gelb
11:30–11:45 COL3A1 haploinsufficiency as a model for variant allele inactivation – Dru Leistritz
11:45–12:00 Splice variants and mosaicism: approaches to therapy – Peter Byers
12:00–12:10 COL3A1 variants and pregnancy-related outcomes in vEDS: the Sheffield experience – Glenda Sobey
12:10–12:20 COL3A1 variants and pregnancy-related outcomes in vEDS: the Rotterdam experience
12:20–12:35 Stratification in obstetric care based on variant identity – Alexandra Benachi
12:35–12:50 TBC
12:25–12:45 Oral abstracts
12:45–13:00 Q&A
13:00 –14:00 LUNCH
Session 3 Kyphoscoliotic EDS (kEDS)—PLOD1, FKBP14
14:00–14:05 Welcome to Session 3 – Marianne Rohrbach
14:05–14:20 Clinical and allelic spectrum of kEDS – Marianne Rohrbach
14:20–14:35 Vascular disease in kEDS – Caroline Michot
14:35–14:50 When to treat, what to follow? – Roundtable
14:50–15:00 TBC
15:00–15:05 Q&A
15:05–15:25 Oral Abstracts
15:25–15:45 BREAK
Session 4 Other Types of EDS
15:45–15:50 Welcome to Session 4
15:50–16:05 dEDS-ADAMTS2: Allelic heterogeneity and genotype-correlations
16:05–16:10 Q&A
16:10–17:00 Strategies towards therapy based on molecular defects: insights gained from other types of EDS
17:00–17:20 Gene therapy: an introduction – Frauke Coppieters
17:20–17:40 Genetic Eye Disease as a Model System for Gene Therapy – Bart Peter Leroy
17:40–17:50 Q&A
17:50–18:00 CLOSING THOUGHTS

Friday September 4
08:30–08:50 Webinar opens for virtual attendees to join
08:50–09:00 Welcome to the event – Fransiska Malfait, Peter Byers
Session 1 vEDS: Therapeutic Innovation
9:00–9:05 Welcome to Session 1
9:05–9:20 Patient perspective – Abbey Phillipson
9:20–9:40 Modifiers of vascular events: of mice and man – Hal Dietz
9:40–10:00 Small molecule therapy in vEDS—antihypertensives and other small molecules in humans and mouse models—Part I – Xavier Jeunemaitre
10:00–10:20 Small molecule therapy in vEDS—antihypertensives and other small molecules in humans and mouse models—Part II – Bart Loeys
10:20–10:35 Single cell profiling of vEDS mouse aorta at baseline and in response to treatments
10:35–10:50 Q&A
10:30–11:15 BREAK
Session 2 Lessons From Other Diseases
11:15–11:20 Welcome to Session 2
11:20–11:35 Osteogenesis imperfecta as a model system – Dimitra Micha
11:35–11:50 Osteogenesis imperfecta as a model system – Antonella Forlino
11:50–12:05 Lessons from Dystrophic Epidermolysis Bullosa: Generalized and Personalized Disease-Modulating Therapies – Alexander Nyström
12:05–12:20 n=1, n=some, and n=all therapeutic genome editing strategies – Mark Osborn
12:20–12:40 Q&A
12:40–13:00 Oral Abstracts
13:00–14:00 LUNCH
Session 3 Gene Therapy for EDS
14:00–14:05 Welcome to Session 3
14:05–14:25 Gene therapy in collagen disorders – Klaudia Kocsy
14:25–14:45 Making and fixing haploinsufficiency – Johannes Dorh
14:45–14:55 Q&A
14:55–15:30 Oral Abstracts
15:30-16:00 BREAK
Session 4 EDS Biobank
16:00–16:10 EDS Society Biobank for Monogenic EDS – Alan Hakim
16:10–16:45 Group Discussion on Biobank
16:45–17:00 Closing Thoughts
END

Registration

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Tickets

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In-Person Ticket

For clinicians, researchers, students, healthcare professionals, patient advocates, non-profit organizations, and others attending in a professional, academic, or advocacy capacity.

Ticket Includes:

  • Admission to the sessions on September 3-4, 2026
  • Refreshment breaks and lunches to be served during the conference.
  • Lifetime on-demand access to presentation recordings after the event
  • Subject to accreditation approval, eligibility to claim Continuing Education credits for sessions viewed LIVE
    • USD $ 270.00
    Industry In-Person Ticket

    For representatives from commercial organizations, including pharmaceutical, biotech, medical device, diagnostics, digital health, AI, genetics, CRO, CMO, research technology, and other healthcare companies.

    Ticket Includes:

  • Admission to the sessions on September 3-4, 2026
  • Refreshment breaks and lunches to be served during the conference.
  • Lifetime on-demand access to presentation recordings after the event
  • Subject to accreditation approval, eligibility to claim Continuing Education credits for sessions viewed LIVE
    • USD $ 399.00
    Virtual Ticket

    This ticket is for all individuals and organizations joining the event remotely.

    Ticket Includes:

  • Virtual access to view all sessions live on September 3-4
  • Subject to accreditation approval, eligibility to claim Continuing Education credits for sessions viewed LIVE
  • Lifetime on-demand access to presentation recordings after the event
    • USD $ 150.00
    Unlimited
    Carer

    For clinicians, researchers, students, healthcare professionals, patient advocates, non-profit organizations, and others attending in a professional, academic, or advocacy capacity.

    Please note: This ticket can only be purchased alongside a full standard In-Person Ticket and is not available as a standalone registration.

    Ticket Includes:

  • Admission to the sessions on September 3-4, 2026
  • Refreshment breaks and lunches to be served during the conference.
  • Lifetime on-demand access to presentation recordings after the event
  • Subject to accreditation approval, eligibility to claim Continuing Education credits for sessions viewed LIVE
    • USD $ 195.00
    Quantity: 0
    Total: USD $ 0.00
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    Sponsorship Opportunities

    Sponsorships are available for this conference, with virtual and in-person package options. Please contact our team directly to discuss sponsorship opportunities.

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