Rare Connection
Rare Connection is a podcast dedicated to rare diseases, undiagnosed conditions, patient advocacy, medical research, and the people working to improve the lives of those living with rare disorders.
Originally launched as Nutrition Equity, the podcast expanded into Rare Connection to reflect its broader mission: sharing the stories, science, and research behind all 10,000+ known rare diseases—not just those related to the Medical Nutrition Equity Act.
Each episode features conversations with patients, caregivers, physicians, researchers, nonprofit leaders, advocates, and biotechnology experts. Together, we explore rare diseases, genetic disorders, newborn screening, clinical trials, emerging treatments, healthcare policy, diagnostic journeys, and the challenges of living with conditions that are often misunderstood.
In medicine, common conditions are often referred to as "horses," while rare diseases are known as "zebras." Although each rare disease affects relatively few people, more than 300 million people worldwide live with a rare disease. Collectively, rare diseases impact more people than many realize, yet they are frequently underdiagnosed, misdiagnosed, or diagnosed only after years of searching for answers.
I host this podcast not only as an advocate, but also as someone living with Homocystinuria (HCU), a rare inherited metabolic disorder. I understand firsthand how isolating a rare diagnosis can be and how important education, research, and community are for patients and families.
Whether you are a patient, caregiver, healthcare professional, researcher, policymaker, student, or simply curious about rare diseases, Rare Connection aims to educate, inspire, and connect people through real conversations and expert insights.
Video episodes are available on YouTube through Rare_Chef, with audio available on all major podcast platforms.
If you have a rare disease, undiagnosed condition, or work in rare disease research, advocacy, or healthcare and would like to be a guest, I'd love to hear from you. Please contact me at joanna.ball41@gmail.com.
Rare Connection is more than a podcast—it's a growing community. Beyond sharing educational interviews, I help connect patients and families with rare disease organizations, Facebook support groups, advocacy groups, clinical trial information, researchers, and others who may be able to provide support or answer questions. Sometimes the most important step is simply helping someone realize they are not alone.
Rare Connection
Narcolepsy With Heather from Maine
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Living with Narcolepsy | Heather's Journey from Surviving to Thriving
Narcolepsy is often misunderstood. Many people associate it with suddenly falling asleep, but the reality is far more complex. Living with narcolepsy can affect work, school, relationships, and everyday life, and many people spend years searching for the right diagnosis.
In this episode of Rare Connection, Joanna sits down with Heather, the Maine NORD (National Organization for Rare Disorders) Ambassador, who is also Miss Maine for America Strong 2026 and preparing to compete for the national title. Heather shares her personal journey of living with narcolepsy, becoming an advocate, and inspiring others with her message that it is possible to go from surviving to thriving.
During this conversation, you'll learn:
- What narcolepsy is and how it affects daily life
- Why narcolepsy is frequently misunderstood and misdiagnosed
- Heather's journey to diagnosis
- How advocacy has shaped her life
- Her role as Maine's NORD Ambassador
- How competing as Miss Maine for America Strong has given her another platform to raise awareness
- Why hope, education, and community matter for people living with rare and chronic conditions
Whether you're living with narcolepsy, supporting someone who is, working in healthcare, or simply interested in learning more about rare diseases, this episode offers insight, encouragement, and practical awareness.
About Rare Connection
Hosted by Joanna Ball, Rare Connection shares the stories of patients, caregivers, advocates, researchers, and clinicians from across the rare disease community. Through connection, education, and conversations about research and clinical trials, the podcast aims to improve awareness and help people affected by the more than 10,000 known rare diseases.
Connect with Rare Connection
- Subscribe for new episodes.
- Follow Rare Connection on YouTube, Facebook, and your favorite podcast platform.
- If you have a rare disease story or work in rare disease advocac
- Connect with Heather: LinkedIn: Heather DiBenedetto | LinkedIn
- Instagram @Heatherbwalker