The European Reference Networks (ERNs), despite their significant potential for public-private partnerships, are often overlooked as key collaborators for research activities by pharmaceutical and biotech companies. This oversight stems primarily from a lack of knowledge and understanding of the ERNs’ valuable assets (quality of the networks/data/infrastructure) and capabilities within the industry.
Many professionals in pharma and biotech are unaware of the extensive patient data, clinical expertise, and collaborative infrastructure that ERNs offer, missing opportunities for mutually beneficial public-private partnerships. These partnerships could leverage the strengths of both sectors: the public health focus and patient access of ERNs, combined with the research capabilities and resources of industry. To bridge this gap and catalyze such collaborations, an educational webinar targeting industry stakeholders is essential. This initiative aims to showcase the ERNs’ unique strengths and demonstrate how public-private partnerships can accelerate rare disease research and drug development, ultimately benefiting patients and advancing medical science.
Main objectives:
- Provide a comprehensive overview of ERNs’ core mission within the European healthcare landscape.
- Detail the specific resources, expertise, and infrastructure ERNs offer, positioning them as valuable partners for conducting research activities in Europe.
- Illustrate how collaborations between ERNs and the private sector can accelerate rare disease research and drug development, benefiting both industry goals and public health outcomes, while done in a straightforward way.
- Acknowledge the diversity of ERNs’ maturity and expertise and capabilities in conducting research activities in partnership with the industry.
This webinar is part of a series. The next webinar, taking place in January 2025, will be about: ‘Industry brings resources and knowledge beyond funding, an articulation of the contribution of the private sectors in public-private partnerships in rare disease research.’
Follow us on LinkedIn for more news.
Speakers:
- Prof. Alberto Pereira, Co-ordinator of the European Reference Network for Rare Endocrine Conditions (ENDO-ERN)
- Dr Franz Schaefer, European Rare Kidney Disease Reference Network (ERK NET) Coordinator, Professor of Pediatrics and Chief of Pediatric Nephrology at Heidelberg University Hospital
- Katarzyna Mosiewicz, Global Patient Journey Senior Manager, Global Medical Affairs, Rare Renal Disorders, Novo Nordisk
- Sheela Upadhyaya, Chair, Together For Rare Diseases