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
TNRC6B With Keyundra From Arkansas
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In this powerful episode of Rare Connection, host Joanna Ball sits down with special needs mom and author Keyundra, who shares the emotional and medical journey of her son Zaire — a child living with multiple rare conditions, including:
🫁 Laryngomalacia – a rare airway disorder
🦠 Neutropenia – a rare immune disorder
🧬 TNRC6B gene mutation syndrome – linked to autism, ADHD, global developmental delays, feeding challenges, and behavioral conditions like OCD, ODD, and bipolar disorder
Keyundra is the author of the children’s book Zaire’s Big Feeling About Feeding, which helps children and families talk about the emotional side of medical feeding challenges. In this interview, she opens up about parenting through uncertainty, advocating for her son’s needs, and writing her way through grief and growth.
👉 What You’ll Hear In This Episode:
How Zaire’s rare diagnoses unfolded
The daily impact of neutropenia and feeding difficulties
What TNRC6B gene mutations mean for development and behavior
How storytelling helps families cope and connect
Why World Airways Day (July 10) matters to this conversation
🔗 Resources Mentioned in This Episode:
📘 Zaire’s Big Feeling About Feeding – https://www.amazon.com/Zaires-Big-Fee...
🌐 Learn more about laryngomalacia: https://copingwithlm.org
🌐 Neutropenia support: https://neutropenianet.or🌐 TNRC6B info: https://rarediseases.info.nih.go👍 Like this video
📲 Subscribe to my channel Rare Chef for more episodes, cooking videos, and rare disease stories
💬 Drop a comment to share your thoughts or support for Keyundra and Zaire
📩 Prefer to listen? Audio show available on all major podcast platforms
📱 Text me your thoughts or questions through the link in the show notes!
💙 Mental Health Resources
If you or someone you know is struggling, the 988 Suicide & Crisis Lifeline is here for you.
📞 Call or Text 988 | 💻 Chat at
Chapter markers
00:00 Intro
01:33 Introducing Keyundra
04:46 Zaire is born premature
06:56 Misdiagnosis Newborn Tachy Apnea
07:44 Zaire is diagnosed with Laryngomalacia
08:25 Zaire's first surgery
09:23 Supraglottiscope