The power of the patient voice in clinical research

Online | Workshop

Nobody understands your community better than you do.

Patient groups know what matters most and what meaningful research should look like. Join this workshop to gain the tools and confidence to bring that knowledge into the world of clinical trials.
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With 95% of rare diseases still lacking an approved treatment, patient groups are a driving force for change. They bring the lived experience and insight needed to shape research that reflects the realities and priorities of their communities. Yet for many, the world of clinical trials can feel complex and out of reach.

About the workshop

This three-part, online workshop is designed to give rare disease patient group leaders the knowledge and confidence to engage with clinical research and make their voices heard.

Across three two-hour interactive sessions, we’ll explore the unique challenges of rare disease trials, share practical solutions, and highlight where patient groups can add value.

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We will cover

Session 1 – Clinical trials in the rare disease context

18th November, 10:00 – 12:00 GMT

Learn more:

This session will provide an accessible overview of what clinical trials are and why they are important. It will cover key concepts such as trial phases, protocols, and the role of regulators, as well as the unique challenges and opportunities that arise when conducting research in rare diseases. Attendees will gain a clear understanding of how trials work and the factors that make rare disease research distinct.

Session 2 – The patient voice in trial design

19th November, 10:00 – 12:00 GMT

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Designing trials for rare diseases comes with unique challenges, from small patient populations to defining outcomes that truly matter. This session will highlight how patient groups can play a crucial role in shaping research so that it is not only scientifically robust, but also meaningful, inclusive, and practical for the people it aims to serve.

We will hear from The Lily Foundation on the important work they are doing in this area!

Session 3 – The patient voice in trial delivery and beyond

20th November, 10:00 – 12:00 GMT

Learn more:

This session will explore how patient groups can contribute during and after a trial. It will cover ways to support participants, engage with researchers, and ensure communities’ voices continue to be heard throughout the research process.

Why join?

  • Build your understanding of how clinical trials work
  • Learn practical ways to influence and support research
  • Hear real-world examples of patient involvement in rare disease trials
  • Connect with other patient group leaders facing similar challenges

Register below to secure your FREE place!

Register
Important Notice: Our ticketing provider, Eventbrite, now allows you to confirm tickets before completing the order form on the next page. To finalise your booking, please ensure you fill out the form in full after paying your deposit.

Deposit system

Registering for this workshop will require paying a refundable deposit of £15 upon registration. This deposit will be kept safe in Eventbrite until after the training has been completed. Following the event, if you have attended and signed in to 2 out of 3 of the sessions, you will get your full deposit back.

We understand that circumstances can change, especially in the rare disease community. Should you register for the event and realise you can no longer attend please let us know as soon as possible. We will endeavour to refund your deposit in full provided reasonable notice is given. Reasonable notice for this event is no later than 3 working days before.

Find out more about our deposit scheme here. If you have any questions, please contact projects@rarebeacon.org.

Key details

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