EP 10 Rachel Heilmann

In this powerful episode of Rare Awareness Radio, host Richard Juknavorian sits down with Rachel Heilmann, Co-Founder and President of The Rory Bell Foundation. Rachel shares her deeply personal journey from a career in clinical pharmacy to becoming a fierce advocate for families affected by ultra-rare diseases. After her daughter, Rory, was diagnosed with NARS1, an extremely rare genetic disorder, Rachel was thrust into a world no parent expects. She recounts the struggles of navigating Rory’s diagnosis, the emotional and medical challenges they faced, and ultimately, the heartbreaking loss that reshaped her purpose. Rather than succumbing to grief, Rachel turned it into action—launching The Rory Bell Foundation to bring joy today and hope for tomorrow. She discusses: 🔹 The foundation’s mission to support families and drive groundbreaking research 🔹 The challenges of raising awareness for an ultra-rare disease 🔹 The power of the rare disease community and how they’re changing the future of medicine 🔹 Winning a Chan Zuckerberg Initiative grant and what it means for the foundation’s future This conversation is a testament to resilience, love, and the impact of advocacy. If you’re inspired by stories of perseverance and purpose-driven change, this is an episode you won’t want to miss. 💡 Learn more and support The Rory Bell Foundation: https://therorybellefoundation.org/ 📢 Listen, Subscribe & Share! 🔔 Follow us for more rare disease stories and advocacy conversations. #RareAwarenessRadio #TheRoryBellFoundation #RareDisease #Advocacy #NARS1 #GeneticDisorders #RareNotRare #PatientAdvocacy #HealthcareInnovation