KHP Rare Disease Network PPIE Event
Demystifying the Connection Between Patients and Researchers
The 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.
**📣 We are also inviting short poster abstracts that highlight inclusive approaches to rare disease research. Full submission guidance is available here: Call for Poster Abstracts (KHP Rare Disease Network PPIE Event).**
Event programme
12.00pm | Arrivals and reception
12.20pm | Welcome and opening remarks
12.30pm | Presentations: Building trust to encourage innovative research that has the greatest possible benefits for people with Sickle Cell Disorder
- Dani Bancroft, Senior Policy and Research Officer, Genetic Alliance UK
- Natasha Gordon-Douglas, NW London Lead Mentor, Sickle Cell Society
- Rutendo Muzambi, Research Associate, Wellcome Trust Fellow, Imperial College London
1.30pm | Lunch and poster presentations (Translational research and PPIE themed)
2.30pm | Panel discussion: Increasing the inclusivity of rare disease research
- Dr Sondra Butterworth, Author of 'Book of Doers' Inclusive Research, RareQoL/EDIRA (Moderator and panelist)
- Dr Sasha Henriques, Principal Genetic Counsellor, Guy’s and St Thomas’ NHS Foundation Trust, and Director of Equity and Assurance, Genomics England (Panelist)
- Jayne Hughes, Founder & Chief Executive Officer, Amy & Friends (Panelist)
- Dr Hanif Ismail, Patient and Public Involvement Lead, Leeds Teaching Hospital (Panelist)
3.20pm | Break
3.35pm | Panel discussion: Enabling rare disease research – maintaining inclusivity with industry
- Dr Deborah Clarke, Head of Medical Affairs, UK & Ireland, Alexion (Moderator and panelist)
- Dr Elizabeth Forsythe, Consultant in Clinical Genetics, Guy’s and St Thomas’ NHS Foundation Trust, and Medical Director, Axovia Therapeutics (Panelist)
- Dr Veysel Kocaman, Chief Technology Officer & Head of Data Science, John Snow Labs (Panelist)
- Caroline Olshewsky, Chief Executive Officer, Lupus UK (Panelist)
4.25pm | Poster prize announcement and award presentation, followed by closing remarks
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This event is made possible through our partnership with organisations across the rare disease community, including:
* Chiesi Limited has provided an unrestricted educational grant for this meeting and has had no involvement in the development of the content, agenda, speaker selection, organisation, or delivery of the meeting.
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The King's Health Partners Rare Disease Network brings together research and clinical groups across the region, facilitating networking opportunities and creating a collaborative environment for cross organisational rare disease research. By enhancing collaboration, scale, and impact of research, the network aims to attract future investment in translational rare diseases research.
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King’s Health Partners Academic Health Sciences Centre (AHSC) is a pioneering collaboration between King’s College London, and Guy’s and St Thomas’, King’s College Hospital and South London and Maudsley NHS Foundation Trusts.
Website: www.kingshealthpartners.org
Location
The Great Hall, Strand Campus, King's College London, WC2R 2LS