Receiving a rare diagnosis can be an incredibly scary, isolating and confusing experience. Patients and parents are often given very little information about what they can expect from the disease and its symptoms, either because the information isn’t in an accessible format, or it doesn’t actually exist. It is likely that their local GP will never have heard of the condition, that there is a host of misleading information online, and that they won’t know anyone else affected.

We help patients and parents to take back control. Our webinars give practical advice to help them build their own support networks, drive research forward, and find the information they need to help themselves and other families. These webinars are broadcast online and recorded, meaning they can be accessed from anywhere around the world at any time, which is crucial for those who aren’t able to travel due to ill-health, disability, or caring responsibilities. Scroll down to view recordings from our past webinars.

Our webinars occur every two months within an annual series. Rare disease patients, parents, advocates, and other interested parties are invited to register for the live broadcast, which takes place on a specified day and time.

Our webinars focus on a particular topic and normally last 1.5hrs: 30 minutes each for two speakers, followed by 30 minutes for questions from the audience. We publish recordings from each of our webinars to ensure a long-lasting impact for the global rare disease community.