Why this platform matters
Between 27 and 36 million people live with a rare disease in the EU. Because of their complexity, they represent the ideal strategic laboratory for designing integrated health solutions, from cross-border care and interoperable data systems to innovation in advanced therapies and clinical trials. By strengthening rare disease ecosystems, Europe strengthens its entire European Health Union, improving resilience, competitiveness and equitable access to innovation for all.
Who should participate
Political Leaders
Policymakers
ERNs
Researchers
Industry
Patients
The Organisers
This platform is led by
European Reference Networks (ERNs)
Today, the 24 ERNs cover the main clusters of rare, complex and low-prevalence diseases and include 1,606 specialised centres located in 375 hospitals across 27 Member States and Norway. The 24 ERN-associated patient registries demonstrate their continued commitment to systemic, standardised data collection and generation of real world evidence to strengthen research collaboration.
Vytenis Andriukaitis
Vytenis Andriukaitis is currently a Member of the European Parliament (MEP) representing Lithuania. Having served as the European Commissioner for Health and Food Safety from 2014 to 2019, he played a key role in promoting European Reference Networks (ERNs). As an MEP, he continues to actively advocate for a comprehensive and strategic European Action Plan on Rare Diseases, emphasizing the need for coordinated research, innovation, and cross-border healthcare collaboration.
With the support of
Brains for Brain Foundation
The Brains for Brain Foundation, led by President Prof. Maurizio Scarpa, is a key advocate in shaping EU rare diseases policy. They organize influential events promoting a sustainable research and innovation ecosystem for rare diseases, emphasizing collaboration among stakeholders. Their work highlights leveraging EU infrastructure, fostering innovation, and pushing policy reforms to accelerate research and treatment development for rare diseases across Europe.
The Team
The HLM4RARE project is anchored by the strategic leadership of European Reference Network (ERN) coordinators, who work in tandem with a robust, 360-degree support team. This multidisciplinary powerhouse provides a full spectrum of expertise, ensuring that clinical vision is seamlessly translated into operational reality. This holistic approach allows HLM4RARE to navigate the complexities of international collaboration and digital innovation, ensuring every facet of the project, from stakeholder engagement to final implementation, is executed with precision and impact.
The Core Team
Maurizio Scarpa
Ruth Ladenstein
María del Mar Mañú Pereira
Alexis Arzimanoglou
Holm Graessner
Luca Sangiorgi
Vytenis Andriukaitis, supported by Inga Stacinskė
The HLM4Rare secretariat
Sofia Brandao, Project manager
, Stakeholder manager
Arianna Canciani, Comms manager
Burson, partner Public Affairs Agency, led by Daniela Negri