Seminar og webinar om Ehlers-Danlos syndrom og bindevevstilstander 25.04.17

Seminaret og webinaret: EDS and connective tissue disorders, ble gjennomført 25. april på Forskningsbygget (Glassbygget) Radiumhospitalet, Oslo. TRS kompetansesenter for sjeldne diagnoser var ansvarlig for arrangementet.  

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