education
Hosted by Joanna · education · EN-US
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 dis
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Contact path
Verified email
Booking probability
33%
Guest openness
Selective
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Signup to Generate a PitchRare 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.
Rare Connection is hosted by Joanna. The show has published 89 episodes to date.
Recent episodes include "Sanfilippo Syndrome with Chelsea from Michigan" (26 October 2026, 57 minutes), "HCU & NF1: Mathew’s Story..." (19 October 2026, 73 minutes), and "Living With Myasthenia Gravis: Tracking Symptoms Between Visits | Camden Hill, California" (19 October 2026, 64 minutes).
Rare Connection publishes roughly weekly, with episodes averaging 67 minutes across 89 episodes.
Booking probability for Rare Connection is 33%, and the host is rated Selective on guests. Rare Connection requires a Pod Score of 80 or higher. Rare Connection's contact route on record: verified email.
The strongest fits for Rare Connection are Health & Wellness Services and Scientific Research & Development. Rare Connection has an education audience.
Joanna hosts Rare Connection, an education podcast with 89 episodes published.
Our AI reads these to draft pitches. Use them as grounding for a pitch that cites a real guest and a specific topic.
Episode #11
Send us Fan Mail When 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, Joanna Ball welcomes Chelsea Walline to...
Episode #9
Send us Fan Mail What 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 father from the United Kingdom, to...
Episode #10
Send us Fan Mail Your 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 Ball welcomes Camden Hill from...
Episode #8
Send us Fan Mail In 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. Wes shares how his unique background...
Episode #7
Send us Fan Mail In this episode of Rare Connection, Joanna speaks with Jeneva and Roger Stone and their son Rob about living with Dystonia-Parkinsonianism, a rare neurological condition affecting movement and speech...
Episode #7
Send us Fan Mail What 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 Genes Movement co-founder Melissa...
Rare Connection
Send us Fan Mail How 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 special two-part episode of Rare Connection...
Episode #5
Send us Fan Mail 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...
Episode #4
Send us Fan Mail What happens when someone with a background in scientific research becomes the patient? In this episode of Rare Connection , I welcome Christine McGarvey , Pennsylvania State Ambassador for the National...
Episode #3
Send us Fan Mail FOXG1 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 my first in-person podcast interview...
Episode #2
Send us Fan Mail n 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 connections between veterinary and human...
Episode #1
Send us Fan Mail Welcome 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 Foundation to explore the growing field...
Episode #13
Send us Fan Mail In 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, emotional well-being, patient-centered...
Episode #12
Send us Fan Mail In this episode of Rare Connection, host Joanna Ball speaks with Dr. Marc Hedrick, President and CEO of Plus Therapeutics, about emerging technologies aimed at improving outcomes for patients with some...
Episode #11
Send us Fan Mail What happens when one rare condition affects the bones, skin, hormones, and development—but looks completely different in every patient? “In this episode of Rare Connection, Joanna is joined by Dr...
Episode #10
Send us Fan Mail What 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—navigating changes in mobility, access to...
Episode #9
Send us Fan Mail Elisa'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 condition that progresses rapidly without...
Episode #8
Send us Fan Mail What 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 with Chuck Hayworth, a 26-year...
Episode #7
Send us Fan Mail What 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 Jenny, a mother of four, whose...
Episode #6
Send us Fan Mail In 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 dystrophy—and how innovation in one...
Recent guests on Rare Connection. Study who booked and why before you pitch.
founder and president, Rare Patient Voice LLC
Professor of Mechanical, Industrial and Manufacturing Engineering, High Plains Herpeotoculture
GOP Political Strategist, NYT Best-selling Author & Radio Host, The Centre for Climate Science, University of Southern Queensland
writer, speaker, photographer, paraeducator, Michellesmission.com
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