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?
Anyone with an interest in rare diseases is welcome to join our webinars. Register for a session below or scroll down to find recordings from past events.
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.”
Below are just a few of the varied webinars we host to help rare disease patients groups professionalise their work. We connect patient groups with those from industry, pharma, academia and the medical profession on our webinars so that the rare community can work toward real change together to advance rare disease care, policy and treatment. Each webinar invites different stakeholders to the table and addresses an area of interest to our patient groups, who want to improve their work and support offerings.