Patient Pathways

 

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 will be further validated and updated when needed.

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

  • The HHT Patient Pathway is available here
  • The HTAD Patient Pathway is available here
  • The MSA Patient Pathway for Vascular Ehlers-Danlos Syndrome is available here
  • The PPL Patient Pathway is currently being tested within the expert centers of the VASCERN PPL-WG
  • Several Patient Pathways for vascular anomalies are currently being discussed within the VASCA-WG.

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