Our webinars provide remote learning for rare disease patient groups who often struggle to travel
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.
Don’t just take our word for it. Meet our community.
How does the webinar programme work?
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.
How do I get involved?
We are currently planning our next annual series, in which we are hoping to run webinars on the following topics:
- Identifying and engaging patients and families: approaches to identifying patients with a specific condition and engaging them in the work of patient groups
- Involving users in information production: the importance of involving users in information production and how this can best be achieved
- Pursuing a diagnosis: how individuals can pursue a diagnosis and how patient groups can support this
- Health economics: introduction to the best data to collect, how to collect it, and what it means
- Patient Registries: different approaches patient groups can take to setting up and maintaining patient registries, to complement our previous workshop
- Monitoring, evaluating and assessing impact: how patient groups and charities can monitor and evaluate their impact, ensuring beneficial projects and helping to secure funding
Keep an eye on this page to find out when the next webinar will be, or sign up to our monthly newsletter to receive updates and alerts on all our projects. If you have any more topics to suggest, or think you could present a talk at one of these webinars, please contact [email protected].
Don’t just take our word for it. Meet Sue.
When Sue’s son was born with Pitt Hopkins Syndrome, an ultra-rare condition that causes seizures and difficulties with breathing, learning and digestion, there was no patient community for her to turn to for support. Sue set up Pitt Hopkins UK in 2013, and has travelled to the majority of our workshops despite living in the Netherlands. Our webinars have given her a much-needed way to learn from her own home. Not having to travel has saved valuable time – crucial when running a charity and caring for her son.
“I really cannot say anything but positive things about Findacure. It really is wonderful that they help us help ourselves by giving us the information we need to move forward.”