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 (issued 11/07/2017) is available  here






This pathway has also kindly been translated in French by FAVA-Multi:

 Le parcours patient de la maladie de Rendu-Osler ici

  • The HTAD Patient Pathway Version 1 (issued 26/04/2018) is available here







  • The HTAD Patient Pathway Version 2 (issued 29/08/2019) is available here


  • The MSA Patient Pathway for Vascular Ehlers-Danlos Syndrome (issued 28/09/2018) is available here





 Italian translation here

The General Patient Pathway for Pediatric and Primary Lymphedema (PPL) (issued 08/11/2019) can be found here






The VASCA-WG Patient Pathway on Severe/Rare Infantile Hemangioma (issued 20/03/2019) is available here





German translation here

Italian translation here

Spanish translation here

Swedish translation here


*The following patient pathways are not yet finalized as they are first being presented at the ISSVA Online Workshop on 14-15 May 2020 to obtain feedback. They will be updated and finalized after this meeting:


*Capillary Malformation

*Venous Malformation

*Lymphatic Malformation

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