OBJECTIVES
Pulmonary arterial hypertension (PAH) and chronic thromboembolic pulmonary hypertension (CTEPH) are rare, severe forms of pulmonary hypertension (PH) characterized by elevated mean pulmonary arterial pressure (mPAP) and ∼20% mortality at 3 years. PAH is defined by progressive obliterative vasculopathy, where...
M. Peracaula, Daniel Aguilar, Á. Vea et al.· Archivos de Bronconeumologia· 0 citations
Rare liver diseases are associated with diagnostic delay, fragmented care, inconsistent management, and limited patient support. Patient pathways may help address these challenges by translating clinical guidance and patient priorities into practical, coordinated care processes. This manuscript presents a European temp...
S. Raevens, Renée Duijzer, A. Fodor et al.· Orphanet Journal of Rare Dis...· 0 citations
Background: Patients with rare vascular liver diseases (VLDs), including non-cirrhotic portal vein thrombosis and Budd–Chiari syndrome, may develop severe complications from an early age. Yet, little is known about their healthcare experience and unmet needs. This study aimed to identify key challenges in the care of t...
M. Guilabert, Agnès Dumas, E. Gil-Hernández et al.· Hepatology Communications· 0 citations
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