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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.
Episodes
62 episodes
NEDAMSS With Liz From Florida
In this episode of Rare Connection, Joanna speaks with Liz, mother of Stephanie, about the ultra-rare IRF2BPL genetic disorder—also known as NEDAMSS—and the groundbreaking milestone of the first-ever IRF2BPL gene replacement the...
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Season 5
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Episode 10
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38:26
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Global Drug Access For Rare Diseases With Aayush Goyal of MedsPartner
Imagine discovering that a life-saving treatment for your rare condition exists — but you can’t get it because it’s not available or affordable in your country. That’s the reality for countless families around the world.In this global ep...
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Season 5
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Episode 9
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37:52
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Palliative care with Anne Front LMFT from California
What’s the difference between palliative care and hospice? Why is palliative care still misunderstood—and how can it support people with cancer, rare diseases, and other serious conditions long before end-of-life?In this powerful episod...
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Season 5
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Episode 8
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41:22
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TNRC6B With Keyundra From Arkansas
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:...
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Season 5
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Episode 7
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59:12
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Idiopathic Intercranial Hypertnsion with Stephanie From Maryland
In this episode of Rare Connection, host Joanna speaks with Stephanie from the EveryLife Foundation for Rare Diseases, who shares her journey living with Idiopathic Intracranial Hypertension (IIH)—a rare neurological diso...
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Season 5
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Episode 6
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46:47
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CLCN6 With Paul From California
In this powerful episode of Rare Connection, we meet Paul, the president of Cure CLCN6 and the father of Paxton, a young boy diagnosed with an ultra-rare visit mutation on the CLCN6 gene.Paxton’s journey beg...
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Season 5
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Episode 5
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54:40
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Sarcoidosis With Regina From Indiana
In this episode of Rare Connection, host Joanna speaks with Regina, a sarcoidosis patient, author, and creative advocate who’s transforming her personal health journey into a source of awareness and empowerment.Aft...
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Season 5
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Episode 4
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49:32
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Glutaric Acidemia 1 with Serena From New Zealand 2nd Anniversary episode
In this special Rare Connection Live episode, host Joannal celebrates 2 years of amplifying rare voices by welcoming Serena, a rare disease advocate and parent from New Zealand.Serena’s daughter lives with GLUT1...
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Season 5
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Episode 3
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1:18:06
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Ank 3 With Tami from Kansas
In this episode of Rare Connection, host Joanna sits down with Tami — a teacher, advocate, and mother of 7-year-old Jonathan, who lives with a rare ANK3-related disorder. Tami shares her family's diagnostic journey, how Jonathan's mult...
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Season 5
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Episode 2
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32:00
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Mental Health and Rare Disase with Frank From New York
🧠 Mental health is rarely optional when you're living with a rare disease. Join Joanna, host of Rare Connection, for a powerful live conversation with Frank, a rare disease patient and mental health advocate who's working...
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Season 5
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Episode 1
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49:07
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Orphan Disease of HLA-B27 With Brenda From Florida
In this episode, I sit down with Brenda, a woman navigating the challenges of a painful, disabling, and unnamed orphan disease. Despite testing negative for VEXAS, relapsing polychondritis, and MAGIC syndrome, Brenda continues to ...
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Episode 13
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53:52
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Neuromyoitis Optica with Nicki From New York
In this episode of Rare Connection, host Joanna Ball speaks with [Guest Name], who shares their powerful journey with [Rare Disease]. Together, they discuss diagnosis challenges, treatment paths, daily life, and advocacy work. Whether ...
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Season 4
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Episode 12
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1:36:49
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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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Amazing Ways tech is helping people with rare disease!
Rare disease patients often face long diagnostic delays, limited access to clinical trials, and challenges in finding treatments. Traditional medical records don’t always capture the full picture, making it harder to identify and support these ...
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Season 4
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Episode 6
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1:03:35
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Sjogren's Syndrome with Mimi From Florida
In this episode of Rare Connection, Mimi shares her 20-year battle for a Sjögren’s syndrome diagnosis—a disease often misunderstood as just a "dry eye disorder" but one that led to respiratory failure and lung scarring in...
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Season 4
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Episode 5
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1:24:05
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Alpha 1 Atrypsijn Deficiency With Mr,. Ohh From Ohio
In this episode of Rare Connection, I sit down with Chris, aka Mr. Ohh, who shares his journey of living with AATD, undergoing weekly infusions, and facing the challenges of this condition—all while using humor as hi...
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Season 4
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Episode 4
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1:11:43
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Hemochromatosis With Michael from Guatemala
Hereditary Hemochromatosis (HHC) is a genetic condition that causes the body to absorb too much iron, leading to serious health complications if left untreated. Many people go undiagnosed for years, mistaking symptoms for other condition...
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Season 4
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Episode 3
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2:04:22
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Acromegaly With Risa From Colorado
Join me as I talk with Risa about her diagnosis with Acromegaly (A rare benign cancer). Learn about Risa's Symptoms and how she deals with her condition on a day to day basis. Risa decided shortly after having surgery to go on a 184...
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Season 4
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Episode 2
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1:04:54
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PKU With Danielle From Maryland
In this episode I talk with Danielle, a parent of a daughter Elsa with PKU and children's book author. Her book Rosey Racoon Has PKU is available on Amazon, See link below. In this episode I talk with Danielle about Her daught...
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Season 4
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Episode 1
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41:53
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Superficial Siderosis With Rori From Texas
In this episode of Rare Connection, Joanna sits down with Rori, Vice President of the Superficial Siderosis Research Alliance (SSRA), to explore the complexities of Superficial Siderosis (SS), a rare and progressive neurodegenerative c...
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Season 3
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Episode 13
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1:13:08
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Male Breast Cancer With Phil From The UK
Not many think of men when they think of breast cancer. Phil found a lump under his left breast while playing with his daughter Evie. Join me as i delve into this important topic. Find out what to look for the symptoms, treatm...
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Season 3
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Episode 12
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29:12
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