Rare cardiovascular diseases represent a heterogeneous group of conditions that are individually uncommon but collectively significant. They include inherited cardiomyopathies, infiltrative and metabolic disorders, channelopathies, aortopathies, as well as rare vascular syndromes and some congenital heart diseases. Recently a plan rare disease 2026-2030 was launched by the federal government. It is an important step towards improved epidemiological monitoring and coordination. However, formally organising a national network dedicated to rare cardiovascular diseases is a challenge to offer uniform access to specialised care.
The Belgian Society wants to play an important role in designing this framework for collaboration of the reference centres with the different partners over the lines of care, the establishment and support of multidisciplinary clinics, the development of generic and personalised care pathways and national registries. These are key steps towards more coordinated, equitable, and efficient management of patients with rare cardiovascular diseases in Belgium.
Read the article Rare cardiovascular diseases: diagnostic progress and organizational gaps: the Belgian perspective recently published in Acta Cardiologica
Plan rare disease 2026-2030 in FR
Plan rare disease 2026-2030 in NL