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Rare Connection
Rare Connection
Latest Episodes
McCune Albright Syndrome With Dr. Giwa From Atossa Therapeutics
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. Adebola Giwa, a pediatric endocrinologis...
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Friedreich's Ataxia With Alexis From Tennessee
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 care, and the challenge of fi...
Adrenoleukodystrophy With Elisa From New York
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 early intervention. Aidan passed away at just ...
26 Year Stomach Cancer Survivor Healing with Food with Chef Chuck
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 survivor of a rare stomac...
Denovo (Genetic But Not Inhereited) With Jenny From Texas
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 children Avery and Paxton were both diagno...