The first two Patient Pathways, one from the HTAD-WG and one from the HHT-WG, have now been published!
Patient Pathways aim to improve the care and management of patients with a rare disease. They are a very important tool used in defining the best patient care. Disease (or group of disease)-specific Patient Pathways are being developped by each of VASCERN’s Rare Disease Working Groups (RDWGs) in order to indicate the optimal mode of evaluation for patient diagnosis, the optimal evaluation of the patient once the diagnosis is made, and the optimal follow-up and therapy for the patient.
Find the Patient Pathway for Hereditary Haemorrhagic Telangiectasia (HHT) here
Find the Patient Pathway for Heritable Thoracic Aortic Diseases (HTAD) here
These are our deliverables for our Work Package 2 “Patient Pathways” for our first year of activities. VASCERN RDWGs will continue to work on the patient pathways as this Work Package is also a part of our action plan for our second year in order to deliver improved patient pathways for all of our RDWGs.
These patient pathways will be further validated and updated when needed. Stay tuned for the publication of other VASCERN patient pathways!