VIDEO: Better education, mentorship needed for patients with glomerular diseases

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The biggest thing with glomerular disease is it's scary, right? You don't know what's gonna happen. You don't know what's going to happen with this disease. These are rare diseases. There's lack of knowledge, there's lack of information, and there's lack of support. I think it's truly important for them to have these networking groups. There's some networking groups that work already and are available to patients, but people who come in to the disease and don't know the history behind it, they don't know other people with it, it's a really challenging and scary place to be at. So really figuring out support for them, getting them information, but also curating that information.

There's so much information out there. How do they figure out what's reliable, what's not reliable? And the information needed for patients and the networking needed for patients is really different for somebody who's advanced in the sense they've had the disease for a while. They have the background knowledge as opposed to somebody who's just completely brand new. So really having an opportunity for people who've had the disease, also mentoring, supporting other patients who are now just coming in with this disease getting diagnosed.