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 ch...
Latest episodes
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57 min
Sanfilippo Syndrome with Chelsea from Michigan
Send us Fan MailWhen you hear “dementia,” you probably think of Alzheimer’s disease and older adults. But children can develop dementia too.In this episode of Rare Connection, Joan…
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1 h 12
HCU & NF1: Mathew’s Story...
Send us Fan MailWhat happens when signs of a second rare condition are dismissed because a child already has one diagnosis?For HCU Awareness Month, Joanna Ball welcomes Joseph, a f…
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1 h 03
Living With Myasthenia Gravis: Tracking Symptoms Between Visits | Camden Hill, California
Send us Fan MailYour symptoms don’t stop when a doctor’s appointment ends. But how do you explain everything that happened between visits?In this episode of Rare Connection, Joanna…
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55 min
Rare Patient Voice with Wes Michael President & Founder
Send us Fan MailIn this episode, Joanna speaks with Wes Michael, President and Founder of Rare Patient Voice, a market‑research industry veteran with over 40 years of experience. W…
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1 h 18
Dystonia-Parkinsonianism With the Stone Family from Maryland
Send us Fan MailIn this episode of Rare Connection, Joanna speaks with Jeneva and Roger Stone and their son Rob about living with Dystonia-Parkinsonianism, a rare neurological cond…
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1 h 32
Wiedemann-Steiner Syndrome With Melissa From New Jersey
Send us Fan MailWhat happens after a family finally gets a name for a rare condition?In this episode of Rare Connection, Joanna talks with rare disease advocate, author, and Rare G…
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1 h 03
Ceiling Track Lifts and Eye Gaze Technology With Jeneva from Maryland
Send us Fan MailHow do you advocate, communicate, and maintain independence when you can't rely on your own voice or easily transfer from bed to wheelchair?In Part 1 of this specia…
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1 h 18
Narcolepsy With Heather from Maine
Send us Fan MailLiving with Narcolepsy | Heather's Journey from Surviving to ThrivingNarcolepsy is often misunderstood. Many people associate it with suddenly falling asleep, but t…
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1 h 00
Undiagnosed With Christine from Pennsylvania
Send us Fan MailWhat happens when someone with a background in scientific research becomes the patient?In this episode of Rare Connection, I welcome Christine McGarvey, Pennsylvani…
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1 h 44
FoxG1 With Patricia from New Jersey in Person in Pennsylvania
Send us Fan MailFOXG1 doesn't just affect the person living with the diagnosis—it changes an entire family.In this special episode of Rare Connection, I travel to Pennsylvania for…
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33 min
EveryCat Health Foundation: The Cat Connection to Long Covid Part 2 With Dr Maggie Placer
Send us Fan Mailn Part 2 of my conversation with Dr. Maggie Placer from EveryCat Health Foundation, we continue our discussion of the One Health approach and the surprising connect…
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1 h 06
EveryCat Health Foundation: The Cat Connection to Long COVID In Humans with Dr Placer
Send us Fan MailWelcome to Season 7 of Rare Connection!What can cats teach us about human health?In this episode, Joanna Ball welcomes Dr. Maggie Placer of the EveryCat Health Foun…
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41 min
Rare Connection 3rd Anniversary Episode With Dr. Margurite Goiter-Stam from Make a Wish International
Send us Fan MailIn this special third anniversary episode of Rare Connection, host Joanna Ball welcomes Dr. Marguerite A.W. Gorter-Stam for a conversation about quality of life, em…
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1 h 39
Can Targeted Radiation Change the Future of Brain Cancer? | Dr. Marc Hedrick | Plus Therapeutics
Send us Fan MailIn this episode of Rare Connection, host Joanna Ball speaks with Dr. Marc Hedrick, President and CEO of Plus Therapeutics, about emerging technologies aimed at impr…
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1 h 06
McCune Albright Syndrome With Dr. Giwa From Atossa Therapeutics
Send us Fan MailWhat happens when one rare condition affects the bones, skin, hormones, and development—but looks completely different in every patient?“In this episode of Rare Con…
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43 min
Friedreich's Ataxia With Alexis From Tennessee
Send us Fan MailWhat does it really take to maintain independence when your body is changing?For people living with rare diseases, that question becomes part of everyday life—navig…
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30 min
Adrenoleukodystrophy With Elisa From New York
Send us Fan MailElisa's son, Aidan, was born healthy—but by first grade, he began losing his vision. He was later diagnosed with adrenoleukodystrophy (ALD), a rare genetic conditio…
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1 h 50
26 Year Stomach Cancer Survivor Healing with Food with Chef Chuck
Send us Fan MailWhat does life look like decades after a rare cancer diagnosis—and how does food play a role in that journey?In this episode of Rare Connection, Joanna sits down wi…
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53 min
Denovo (Genetic But Not Inhereited) With Jenny From Texas
Send us Fan MailWhat if two of your children were diagnosed with two completely different rare genetic conditions… on the same day?In this episode of Rare Connection, I speak with…
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1 h 13
New Drug For Duchenne Muscular Dystrophy With Dr. Steven Quay
Send us Fan MailIn this episode of Rare Connection, I’m joined by physician-scientist and biotech CEO Dr. Steven Quay to discuss an emerging approach to treating Duchenne muscular…