Join the launch of the Together4RD Toolkit for Public-Private Partnerships in Rare Disease Research

Attention ERN research community!

ERDERA& Together4RD webinar on Monday, 23 June at 17:00 CEST to mark the official launch of the Together4RD Toolkit — a new strategic resource designed to support European Reference Networks (ERNs) in establishing more effective, transparent, and mutually beneficial collaborations with industry partners.

Co-created with ERN and industry stakeholders and grounded in real-world pilot experiences, the Toolkit directly addresses common challenges in rare disease research, such as legal uncertainties and misaligned expectations.

Far more than a collection of resources, the Toolkit serves as a practical guide to help ERNs and companies:

• Accelerate diagnosis
• Improve clinical outcomes
• Generate real-world evidence

It features actionable guidance, case studies, and key recommendations to build partnerships based on trust and shared objectives.

Main objectives:

1. Introduce the Together4RD Toolkit as a practical guide for initiating and structuring ERN-industry collaborations
2. Demonstrate how the Toolkit supports strategic alignment with ERNs and contributes to ERDERA’s WP25.4 goals
3. Equip academic and industry stakeholders with the insights needed to use the Toolkit as a starting point for designing rare disease research initiatives that reflect both scientific priorities and real-world opportunities and constraints.

Speakers

• Moderator: Daria Julkowska (ERDERA)
• Vicki Hedley (Together For Rare Diseases)
• Maurizio Scarpa (Coordinator, ERN For Hereditary Metabolic Diseases – MetabERN)

This webinar will introduce the Toolkit, highlight its practical use, and invite feedback from the community — all with the aim of advancing a more coordinated, sustainable, and inclusive rare disease research ecosystem across Europe.

This initiative supports ERDERA Work Package 25.4, which aims to align ERNs with ERDERA’s research agenda and establish an “ERN Living Lab” for collaboration. The Toolkit is a key resource to facilitate joint action, exchange knowledge, and turn research into impact for patients.