My name is Charly and I’m an RPV Patient Panelist who’s overcoming Sickle Cell Anemia
I was a part of the Rare Patient Voice I believe since March of 2017. Participating in a Rare Patient Group by far for me, it’s been an excellent experience. Like the, the way how the coordinators are so loving, so attentive, so compassionate for people like me. You know the video chat, people are just so friendly. It really gave me purpose, you know to live with, you know with this cause, I felt like I wasn’t being judged. I felt like, you know a normal human being and not just like some type of you know thing that you know has sickle cells.
