Published: 30/08/2023 Tags: The Ehlers-Danlos Society News

Genetically-Defined EDS: Strategies and Solutions for Unmet Needs

Today, The Ehlers-Danlos Society, The Ehlers-Danlos Society’s Chief Scientific Officer and Scientific Chair Professor Fransiska Malfait, and the Scientific Committee begin two days of discussions and collaborations at the Genetically Defined EDS: Strategies & Solutions for Unmet Needs Hybrid Meeting in Ghent, Belgium, and live-streamed around the world. The term ‘genetically defined’ applies to those types of EDS with known genetic causes. 

The event brings together 200 scientists, healthcare providers, patient advocate groups, and patients from around the world 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. A truly global meeting, attendees are joining in person and virtually from countries including Belgium, France, USA, Canada, Japan, Netherlands, Hungary, Sweden, Switzerland, and the UK. 

From August 30-31, leading expert speakers will share knowledge on the genetically defined types of EDS taking advantage of bringing together and expanding different European and international networks involved in EDS (including participants from underrepresented countries). 

The networking event will encourage new interdisciplinary international collaborations and provide international resources for clinical and molecular diagnosis and care. The meeting will provide the opportunity to develop new research hypotheses, priorities, and strategies. Project ECHO® designates this live activity for a maximum of 13.5AMA PRA Category 1 CreditsTM.

Community member, Edward Fraser, opens today’s event by sharing his experience with attending health professionals and scientists, of PLOD1-related kyphoscoliotic Ehlers-Danlos syndrome. Edward shares what finally having a confirmed genetic diagnosis meant to him, and how it benefit his subsequent medical care. 

Edward struggles with achalasia, which makes it difficult for food and liquid to pass into the stomach. Edward lost a lot of weight and had severe difficulties swallowing. Edward shares how often his challenges with health lead to surgery, and the intense planning and monitoring needed from his surgical team to care for him safely and ensure a successful surgery. 

Edward’s journey highlights why this international event is so vital to encourage new interdisciplinary international collaborations and to provide global resources for clinical and molecular diagnosis and care.

Community Voices will also be heard today from individuals from around the world living with classical-like EDS, dermatosparaxis EDS, vascular EDS, and periodontal EDS

View the agenda and learn more about the speakers here. 

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Would you like to speak to others living with EDS and HSD but can’t get to any support group meetings, events, or conferences?

Our weekly, monthly, and quarterly virtual support groups for people from all over the world are a chance to come and share your story and chat with others for support.

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