Deltakere var representanter for brukerforeningen (EDS foreningen), fagpersoner og forskere fra USA og Norge
Spesielt invitert gjest var: Peter H. Byers, Professor i patologi og medisin (Medical Genetics) og direktør for "the Collagen Diagnostic Laboratory and Center for Precision Diagnostics", University of Washington, Seattle.
Deler av programmet (på engelsk) er tilgjengelig som webinar:
- Current patient topics of interest. v/ Line Blålid, Manager of the EDS Association, Norway
- Experience with patients with joint hypermobility in a physiatrist clinic v/ Fredrik Walter Smith, OUS, Norway
- Ehlers-Danlos syndrome, update on classification, clinical findings and natural history v/ Peter H. Byers, University of Washington, Seattle, Washington, USA
- Aneurysms – genetic approaches to causation and natural history v/ Peter H. Byers, University of Washington, Seattle, Washington, USA
- Information about the new Connective Tissue Clinic v/Odd Geiran, OUS, Norway
- Case presentation v/ Nina Riise, TRS National Resource Centre for Rare disorders, Norway
- Panel discussion: Where do we go from here?
Se webinaret her