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.