My Caregiver Enables Me To Live A Great Live
Hi everybody, John, Rare Patient TV. Well, living life with a rare disease is hard enough. But lot of times, it’s the caregivers. They are the inspirational force in allowing ... READ MORE
Meet RPV Panelist Anthony
Hi, my name is Anthony Stoecker and I first heard about Rare Patient Voice when I was at a Huntington’s disease conference. And, um, I signed up for it because ... READ MORE
Meet Rob, RPV Panelist & Hemophilia Patient
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 ... READ MORE
Meet RPV Panelist and Caregiver Julie R.
Hi, I’m Julie. I’ve been a member of Rare Patient Voice for over four years. And what comes to mind when I think about Rare Patient Voice is all the ... READ MORE
Christian
My name is Christian and I’m an RPV Patient Panelist who’s overcoming Multiple Sclerosis How does Rare Patient Voice fit into your life regarding support groups with others who understand/share ... READ MORE
Kristopher
My name is Kristopher and I’m an RPV Patient Panelist who’s overcoming Hemophilia. I really like taking the surveys because I feel like I’m making an impact. I’m able to ... READ MORE
Keith MS
My name is Keith and I’m an RPV Patient Panelist who’s overcoming Multiple Sclerosis My choice today is to not be afflicted by MS but to live with MS. To ... READ MORE
Jessica
My name is Jessica and I’m an RPV Patient Panelist who’s overcoming Kugelberg Welander disease I have spinal muscular atrophy type 3, also known as Kugelberg Welander disease. I do ... READ MORE
Barbara Pul Hyper
My name is Barbara and I’m an RPV Patient Panelist who’s overcoming Pulmonary Hypertension Hello. My name is Barbara Thompson. I was diagnosed with pulmonary hypertension in December of 2002. ... READ MORE
Charly Blakk
My name is Charly and I’m an RPV Patient Panelist who’s overcoming Sickle Cell Anemia Hey, it’s Charly. Welcome to another episode of Rare Patient Voice TV. The reason for ... READ MORE
Stephan MS
My name is Stephan and I’m an RPV Patient Panelist who’s overcoming Multiple Sclerosis The online surveys are pretty easy and they let you be specific about your answers because ... READ MORE
Lisa Huntley WS
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 ... READ MORE
Jennifer MD
My name is Jennifer and I’m an RPV Patient Panelist who’s overcoming Muscular Dystrophy. Hello. I am Jennifer, and I live in Maryland. I have been a member of Rare ... READ MORE
