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he King's Health Partners Rare Disease Network invites you to a half‑day event focused on demystifying the connection between patients and researchers and strengthening the partnerships that drive inclusive and impactful rare disease research.
This event brings together patients, researchers, clinicians, students, industry partners, and patient organisations to explore how collaboration can improve the way rare disease research is designed, delivered, and shared. Through real stories, practical examples, and open discussion, we will highlight what meaningful Patient and Public Involvement and Engagement (PPIE) looks like in practice and why it is essential in achieving better outcomes for people living with rare conditions.
The programme includes short presentations, an opportunity to network over a high‑tea reception with poster displays, and two expert panel discussions exploring both the challenges and enablers of inclusive research. Themes will include:
- Building equitable patient–researcher partnerships
- Increasing inclusivity in rare disease research
- Working with industry to support inclusive, impactful research
- Learning from lived experience to shape priorities and future directions
Whether you are actively involved in research, living with a rare condition, working in clinical care, part of a patient organisation, or simply interested in how collaboration can improve research outcomes, this event offers space to learn, reflect, share, and connect.
We welcome anyone with an interest in rare disease research and inclusive practice. Attendance is free, but registration is required.
Further details coming soon.
This event is made possible through our partnership with organisations across the rare disease community, including:
