Patient Pathways
Our patient pathways aim to improve the care and management of patients with rare vascular diseases. They include “red flags” that may indicate the presence of the disease, how to reach a definitive diagnosis, and management and follow-up recommendations. They are critical tools for defining the best patient care and will be validated and updated as needed.
These are the deliverables for our Work Package on “Patient Pathways.” VASCERN’s Rare Disease Working Groups are developing disease (or group of disease) specific Patient Pathways.
The CADASIL Patient Pathway document, prepared by the VASCERN NEUROVASC Working Group, outlines a comprehensive patient management strategy for CADASIL. It details diagnostic, genetic testing, and follow-up protocols for asymptomatic and symptomatic individuals, including the role of geneticists, neurologists, and multidisciplinary care teams. The pathway emphasizes the importance of specialized centers for accurate diagnosis and management.
This is version 4 of the General Patient Pathway for Pediatric and Primary Lymphedema. It offers a detailed pathway that outlines the journey from diagnosis through treatment and management. For more insights on the patient pathway for pediatric and primary lymphedema, we invite you also to read the published paper.
This document offers a detailed pathway that outlines the journey from diagnosis through treatment and management. For more insights on the Lymphatic Malformation Patient Pathway, we invite you to also read the published paper and watch the webinar replay on this pathway.
This document offers a detailed pathway that outlines the journey from diagnosis through treatment and management. For more insights on the Venous Malformation Patient Pathway, we invite you also to read the published paper and watch the webinar replay on this pathway.
This document offers a detailed pathway that outlines the journey from diagnosis through treatment and management.
This document offers a detailed pathway that outlines the journey from diagnosis through treatment and management. For more insights on the Severe/Rare Infantile Hemangioma Patient Pathway, we invite you also to read the published paper and watch the webinar replay on this pathway.
This document is an opinion statement reflecting strategies put forward by experts and patient representatives involved in the Medium Sized Arteries (MSA) Rare Disease Working Group of VASCERN.