Rare Patient Voice

Rare Patient Voice is a research organization that connects patients and family caregivers with opportunities to share their health experiences and opinions. Based in Towson, Maryland, they help people with rare and non-rare medical conditions participate in paid surveys, interviews, focus groups, and clinical trials. By sharing their insights, participants contribute to improving healthcare products, services, and treatments. Rare Patient Voice works with researchers, advocacy groups, and healthcare companies to ensure patient perspectives are included in research. Their mission is to empower patients and caregivers to be heard, influence healthcare decisions, and help shape better outcomes for people living with health conditions.