HLM4Rare

Initiative leader: European Reference Networks & Vytenis Andriukaitis

Duration: Not determined

Health Leadership Mission for Rare Diseases (HLM4Rare) is a strategic, mission-oriented platform designed to move beyond political alignment and drive coordinated, measurable delivery for rare and complex diseases across Europe.

HLM4Rare builds on the strong momentum generated by the High-Level Meeting on a European Innovation and Care Ecosystem for Rare and Complex Diseases 2025 (HLM Rare 2025), held from 9-11 December 2025. The meeting marked a decisive step forward in placing rare diseases at the centre of the EU health and research agenda, convening policymakers, institutions, researchers, clinicians, industry leaders, and patient representatives around a shared strategic vision.

A key milestone of HLM Rare 2025 was the adoption of the Declaration on the European Innovation and Care Ecosystem for Rare and Complex Diseases. The Declaration sets out eight priority recommendations that form a structured and forward-looking framework for action, guiding policy alignment, investment strategies, innovation pathways, and the strengthening of care ecosystems across Member States. 

ECRIN's Role in HLM4Rare

ECRIN participates in two of the dedicated working groups from this initiative: clinical trials and CORDICS.