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Rare Connection
Formerly Nutrition Equity, rare connection is an extension of the podcast to include all 10,000 rare conditions and not just those covered by the Medical Nutrition Equity Act. Some of the conditions may be the same, but I am trying to turn this into a learning experience for those in the medical feild, policy leaders, and those who are just interested in hearing about rare conditions and patient stories. Rare conditions are called zebras hence the zebra striped ribbon. More common conditions are called horses. Doctors tend to learn a lot about the common conditions, but rare conditions are a paragraph in a text book at best because the medical field isn't looking at the whole picture. Rare conditions when combined are actually bigger than cancer and strokes combined and if you have a rare condition you most likely have more than one or will develop another within your lifetime. As someone with a rare condition myself (Homocystinuria or HCU), know that having a rare condition can be very lonely. Thereis normally a phsycological aspect to any rare condition, and because of lack of understanding they often go undiagnosed or misdiagnosed which can cause serious health consequences or even death. If you are interested in talking and feel comfortable on camera please contact me at joanna.ball41@gmail.com. I have a visual version of this podcast on YouTube also under my cooking channel Rare Chef.
Podcasting since 2023 • 50 episodes
Rare Connection
Latest Episodes
Familial Adenomatous Polyposis With Jenny From Oklahoma
In this milestone 50th episode of Rare Connection, host Joanna sits down with Jenny, the powerful voice behind the blog Life’s A Polyp. Diagnosed with Familial Adenomatous Polyposis (FAP) as a child, Jenny underwent a t...
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Season 4
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Episode 11
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40:10
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From Researcher to Lymphocytic Colitis Patient Ben From South Dakota
In this episode of Rare Connection, I sit down with Ben, a rare disease researcher and advocate with over 15 years of experience in cell and molecular biology, clinical research, and leadership. Ben shares his personal journey living w...
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Season 4
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Episode 10
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1:29:05
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Unnamed Chromosomal Disorder With Melissa From Minnesota
Melissa was 17 when she had her first child Evan. Evan was born with a cleft palate and developed 30 other conditions throughout his life. He wasn't expected to live and doctors told her to take him home and let him pass naturally.&...
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Season 4
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Episode 9
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43:56
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RareGen's Impact: Khartik Uppalapati on Science, Policy, and Patient Empowerment
Guest: Khartik Uppalapati, Co-founder of RareGen Youth NetworkEpisode Description:In this episode of Rare Connection, host Joanna welcomes Khartik Uppalapati, a remarkable young leader at the intersection of biomedic...
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Season 4
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Episode 8
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37:12
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Cerebral Cavernous Malformation With Elizabeth From Oregon and Allison from DC
Guest(s): Allison & ElizabethEpisode SummaryIn this episode of Rare Connection, I’m joined by twin sisters Allison and Elizabeth, who both have familial Cerebral Cavernous Malformation (CCM)—a rar...
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Season 4
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Episode 7
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2:19:52
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