The Thrombotic Microangiopathies Working Group brings together clinical and scientific experts across Europe committed to improving diagnosis, treatment, and outcomes for patients with rare and life-threatening TMAs—disorders characterized by microvascular thrombosis, thrombocytopenia, and organ damage. Key disease entities in this group include atypical hemolytic uremic syndrome (aHUS), immune-mediated HUS (iHUS), and other secondary forms of TMA.

The group’s activities are structured around four core pillars:

Clinical Guideline Development:
The group aims to support harmonized diagnostic and therapeutic approaches by contributing to the development of evidence-based clinical guidance. It promotes comprehensive diagnostic workups to distinguish between primary and secondary TMAs and to guide treatment decisions accordingly.

Research and Data Analysis:
The group actively leverages data from the European Rare Kidney Disease Registry (ERKReg), particularly through focused TMA subregistries. A recent landmark study—Real-world use of complement inhibitors for haemolytic uraemic syndrome—analyzed data from 238 aHUS and 472 iHUS patients across 24 countries. Findings highlighted major variation in C5 inhibitor use, patterns of treatment discontinuation, and relapse risk, offering key insights for personalized management.

Education and Knowledge Sharing:
By delivering expert-led webinars, educational content, and modules for the ERKNet Postgraduate Curriculum, the group raises awareness of TMA pathophysiology and supports clinicians in navigating the complex diagnostic and therapeutic landscape of these disorders.

For more information on Thrombotic microangiopathies visit our disease information Page