Hey, so I’m Rob. I’m going to talk a little about my experience with Rare Patient Voice. Um, it’s been a really good experience. I like doing the surveys because they really get me to think a lot about the treatment that I receive and the medication, the factor with hemophilia and, you know, lots of things that I haven’t thought about much because I’ve just had to deal with it my whole life. So that’s, it’s been, it’s been helpful for me to really think about, uh, what would I need in a product to get me to, to change. Um, would the medication need to be different? Would I have to take, how many times a week would I have to take it. Right, it’s a lot of those kinds of questions because I think that’s really what manufacturers are kind of looking at. How they can, uh, make the experience better for us in some ways. I’m not sure that’s always their incentive.
Helping Patients with Rare Diseases Voice Their Opinions
