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.

🎙️ HS Brotherhood Podcast | Episode 7: Mario Otero’s Journey with Clinical Trials

Join us for an inspiring conversation with Mario Otero (follow him on TikTok @motero8111 or Instagram @bama_mario) as he shares his courageous journey participating in clinical trials for Hidradenitis Suppurativa (HS).

In this powerful episode, Mario opens up about the challenges, breakthroughs, and hope he found while contributing to advancements in HS treatment.

As an advocate and warrior, Mario’s story sheds light on the importance of clinical trials in shaping the future of HS care. From navigating uncertainties to finding empowerment through advocacy, his experience is a testament to resilience and community strength.

Tune in to hear how Mario is paving the way for others in the HS Brotherhood and beyond. Your journey matters, and so does your voice. 💪

🔗 Listen now on your favorite podcast platform.

For clinical trial resources, visit hsconnect.org/clinical-trials/

✨ Follow Mario for more of his story: TikTok | Instagram

This podcast was made possible by Moonlake.

Hey fam! 💪 This episode is for anyone who’s ever side-eyed a treadmill or panicked about gym flares. Joey and Parish get REAL about their fitness journeys with HS.

For HS-friendly exercises, check out HS Connect's Healing Space at hsconnect.org/healingspace.

This podcast was made possible by Moonlake.