Online workshop: Patient voice in clinical research

This three-day online workshop is designed especially for rare disease patient group leaders who want to build the knowledge, skills, and confidence to shape clinical research and ensure the patient voice is at the heart of it.

Through three interactive sessions, you will:

• Gain a better understanding on how rare disease trials work and their challenges
• Discover how you can make a real impact in research design and delivery
• Connect with other patient group leaders in the rare disease community

Session 1: Clinical trials in the rare disease context

18th November 2025, 10:00am - 12:00pm (GMT)

Learn the basics of clinical trials, including trial phases, protocols and the role of regulators.

Session 2: The patient voice in trial design

19th November 2025, 10:00am - 12:00pm (GMT)

Learn how patient groups can shape rare disease clinical trial design, ensuring studies reflect real patient needs.

Session 3: The patient voice in trial delivery and beyond

20th November 2025, 10:00am - 12:00pm (GMT)

Learn how patient groups can actively support the delivery of rare disease clinical trials during the study and beyond.

If you'd like to learn more, please visit our website.

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.