Why Your Story Matters in Rare Disease Research

Welcome to Season 2, Episode 1 of HS Brotherhood! Your hosts Joey Torre and Parish Armstead are back and kicking off this season with a powerful conversation you won’t want to miss. This week, they’re joined by Stacey Haines, Patient Outreach and Social Media Manager at Rare Patient Voice — a company dedicated to empowering patients and caregivers from rare disease communities to make their voices heard. In this episode:Stacey opens up about her personal journey — from caregiver to patient-advocate — and how that experience shaped her work at Rare Patient Voice. She shares how Rare Patient Voice connects patients and caregivers with research opportunities (including paid surveys and interviews), helping bridge the gap between lived experience and medical development.This episode brings fresh perspective on giving voice to underserved communities. With Stacey’s lived perspective and Rare Patient Voice’s mission to uplift patient opinion in research, you’ll walk away with a deeper understanding of both the human side of rare disease and the strategic implications for ethical engagement.Connect & engage Check out Rare Patient Voice (https://rarepatientvoice.com) to learn more about how patients and caregivers can contribute to research and influence change.  Stay tuned for the rest of Season 2 of HS Brotherhood - subscribe so you get all the latest episodes. This podcast was made possible by Moonlake.