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September 28 2018

Patient Pathway for Vascular Ehlers-Danlos Syndrome by MSA-WG now Available!


We are delighted to report that the MSA-WG has just published their Patient Pathway on Vascular Ehlers-Danlos syndrome!

Patient Pathways aim to improve the care and management of patients with a rare disease. They include the “red flags” that may lead to the suspicion of the disease, how to reach a definite diagnosis and the management and follow-up recommendations. They are a very important tool used in defining the best patient care and each one will be further validated and updated as needed.

Find the Patient Pathway for vascular Ehlers-Danlos sydrome (vEDS) here

These documents are the deliverables of our Work Package “Patient Pathways” and disease (or group of disease)-specific patient pathways are being developped by each of VASCERN’s Rare Disease Working Groups (RDWGs).

All of the patient pathways currently available can be found on the patient pathways page here 

They can also be found directly via the Rare Disease Working Group pages, under the section dedicated to patient pathways:

  • Patient Pathways from the Hereditary Haemorrhagic Telangiectasia (HHT) here
  • Patient Pathways from the Heritable Thoracic Aortic Diseases (HTAD) here
  • Patient Pathways from the Medium-Sized Artery Diseases (MSA) here

Please note that the patient pathway for Pediatric and Primary Lymphedema is currently being tested within the expert centers of the VASCERN PPL-WG and will be found here when ready, and several patient pathways on vascular anomalies are currently being developped by the VASCA-WG and will be available here in the future.

We will continue to keep you updated with each new publication!

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