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).

Hereditary Haemorrhagic Telangiectasia (HHT-WG)

  • 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

Heritable Thoracic Aortic Diseases (HTAD-WG)

  • 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

Medium Sized Arteries (MSA-WG)

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

 

 

 

 

 Italian translation here

Pediatric and Primary Lymphedema (PPL-WG)

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

 

 

 

 

 

The new V2 version of the General Patient Pathway for Pediatric and Primary Lymphedema (PPL) (issued 21/06/2021) can be found here

 

Vascular Anomalies (VASCA-WG)

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 Capillary Malformation Patient Pathway (issued 29/04/2020) can be found here

 

 

 

 

 

 

The Venous Malformation Patient Pathway (issued 29/04/2020) can be found here

 

 

 

 

 

 

The Lymphatic Malformation Patient Pathway (issued 29/04/2020) can be found here

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