My name is Lisa and I’m an RPV Patient Caregiver whose grandson overcomes Muscular Dystrophy
I participate in the Rare Patient Voice because I have a grandson who has muscular dystrophy, particularly Duchenne’s Muscular Dystrophy. I like to do the surveys, because it helps me understand his disease.
New things are coming down the pipeline for his disease. It has given me a lot of hope, and a chance to connect with other patients and their caregivers. I found other people in my area that have children with rare diseases.
Reading everything that you hear and see on websites about children not able to walk after 12 and not living until their late 20s was kind of hard. But we’ve learned, through different websites and different communities, that things are changing. There are things down the pipeline. And people are actually working on this and trying to find something to help.
For anyone that has a child or has been diagnosed with a rare disease, I suggest very highly that you get involved with Rare Patient Voice. Not only do you get surveys and learn about new things that are coming down the pipeline, but they do give you an incentive for doing these surveys.
Doing the videos was very easy. You guys made it great, and accessible, and not hard at all. All in all, it was a wonderful experience. I enjoy anything that Rare Patient Voice has that comes to me. And I am always willing to be involved.