Best Zebra Developers Podcasts (2025)

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From Researcher to Lymphocytic Colitis Patient Ben From South Dakota 1:29:05

4d ago1:29:05

1:29:05

Send us a text 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 with lymphocytic colitis and oral lichen planus—two often misunderstood conditions—and his profession…

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Unnamed Chromosomal Disorder With Melissa From Minnesota 43:56

25d ago43:56

43:56

Send us a text 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. She was given what she calls a never list (He will never sit up, he will never talk, he will never stan…

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RareGen's Impact: Khartik Uppalapati on Science, Policy, and Patient Empowerment 37:12

2M ago37:12

37:12

Send us a text Guest: Khartik Uppalapati, Co-founder of RareGen Youth Network Episode Description: In this episode of Rare Connection, host Joanna welcomes Khartik Uppalapati, a remarkable young leader at the intersection of biomedical research and rare disease advocacy. Khartik shares his personal journey with rare conditions, which ignited his pa…

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Cerebral Cavernous Malformation With Elizabeth From Oregon and Allison from DC 2:19:52

2M ago2:19:52

2:19:52

Send us a text Guest(s): Allison & Elizabeth Episode Summary In this episode of Rare Connection, I’m joined by twin sisters Allison and Elizabeth, who both have familial Cerebral Cavernous Malformation (CCM)—a rare genetic condition that causes clusters of abnormal blood vessels in the brain and spinal cord. They share their personal diagnosis jour…

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Jeff McDonald CEO Kythera Labs 1:03:35

2M ago1:03:35

1:03:35

Send us a text 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 patients. But what if advanced data and AI could change that? In this episode of Rare Conne…

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Sjogren's Syndrome with Mimi From Florida 1:24:05

2M ago1:24:05

1:24:05

Send us a text 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 her case. She opens up about her journey with pulmonary fibrosis, nightly oxygen therapy, and the challenges of b…

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Alpha 1 Atrypsijn Deficiency With Mr,. Ohh From Ohio 1:11:43

2M ago1:11:43

1:11:43

Send us a text 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 his greatest weapon. We dive into what it’s like to navigate daily life with AATD, the lung-liver connection, and how lau…

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Hemochromatosis With Michael from Guatemala 2:04:22

3M ago2:04:22

2:04:22

Send us a text 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 conditions. In this episode of Rare Chef, I sit down with Michael J. Tallon, an author, traveler, and rare …

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Acromegaly With Risa From Colorado 1:04:54

3M ago1:04:54

1:04:54

Send us a text 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 1845 mile bike ride from Colorado to Mexico despite her doctors advising against it. You can read more abo…

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PKU With Danielle From Maryland 41:53

3M ago41:53

41:53

Send us a text 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 daughter's diagnosis with PKU, and the fears and challenges she went through as a parent, her daughter's symptoms w…

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Superficial Siderosis With Rori From Texas 1:13:08

6M ago1:13:08

1:13:08

Send us a text 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 condition. Together, they discuss: The causes, symptoms, and diagnostic challenges of SS. Current tre…

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Male Breast Cancer With Phil From The UK 29:12

6M ago29:12

29:12

Send us a text 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, treatment, about various support groups and more. You can contact me to let me know you thoughts through the link i…

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Homocystinuria With Erika from Florida 48:14

6M ago48:14

48:14

Send us a text Erika is the parent of 24 year old nonverbal adult Alexa. Erika is talking for Alexa in this episode, Learn about Alexa's story, Learn how Erika communicates with Alexa, their struggles getting a diagnosis, The Medical Nutrition Equity Act and sources that can help with of Medical Food Formula and vitamins that are imperative For tho…

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Homocystinuria Awareness Month: Classical Homocystinuria with Denise From Ohio 44:25

7M ago44:25

44:25

Send us a text Denise's child Rileu is one of few that I have spoken to that was diagnosed through newborn screening. Although Homocystinuria is on the Newborn Screening Nationwide it only catches a case 50% of the time. We are working on enhanced Newborn screening but newborn screening saves lives has not been reauthorized yet. Follow along as I t…

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Homocystinuria Awareness Month: Classical Homocystinuria with Anna from Uruguay 42:18

7M ago42:18

42:18

Send us a text This episode marks my second HCU Awareness month doing podcasting, and my 3rd international episode, In this episode I talk with Anna about her 12 year old daughter Juana who was diagnosed with Classical Homocystinuria. She was the first to be diagnosed with Classical HCU in Uruguay. Learn how Anna gets testing done in a country wher…

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Chronic Intestinal Pseudo Obstruction With Briana From Ohio 1:13:12

7M ago1:13:12

1:13:12

Send us a text Briana's son was diagnosed with Maple Syrup Urine Disease and Chronic Intestinak Psuedo Obstruction, He will be undergoing a dual transplant of both the small intestine and the Liver. Liver transplants have been known to cure Maple Syrup Urine Disease, Both conditions are covered by the Medical Nutrition Equity Act which would mandat…

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Dyskeratosis Congenita with Damien from Arizona improved sound from live 1:13:28

8M ago1:13:28

1:13:28

Send us a text This is an audio playback from the live version of my podcast earrlier today with Damien. If you were listening to the live version, I rerecorded my part to make it clearer. I am hoping that upgrading my internet plan will help with the video version. This episode is on Dyskeratosis Congenita (bone marrow failure) by means of Short T…

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Congenital Muscular Dystrophy Newborn Screening Awareness Month 20:45

8M ago20:45

20:45

Send us a text Despite Congenital Muscular Dystrophy not being tested for at birth, some companies are working on getting it passed. This is Newborn Screening Awareness Month. Since the bill hasn't been reauthorized in all states lack of funding could be harming those who are born with new conditions that may or may not be able to be tested dependi…

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Hemophilia with Patrick James Lynch From Believe limited 40:38

8M ago40:38

40:38

Send us a text Patrick James Lynch is a Hemophilia patient, and advocate, fim maker and podcaster. His films include Bomardier Blood, Deliver Us and My Beautiful Stutter as well as many others, He has been won several awards including the Rare impact award from the National Association for Rare Disorders (NORD) the Meritorious service award in and …

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Long Chain Hydrocxy Coenzyme A Dehydrogenase Deficiency (LCHAD) 39:08

8M ago39:08

39:08

Send us a text This week Rare Connection goes back to it's roots with a condition covered by the Medical Nutrition Equity Act if it were to pass. The MNEA would mandate that health insurance cover medically prescribed food, formula and vitamins for those who need them. At the beginning of last season in February Nutrition Equity became Rare Conne68…

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Hypohidrotic Ectodermal Dysplasia With Rebekah From Oregon 29:46

9M ago29:46

29:46

Send us a text Join me as I talk with Rebekah about her child Mason's diagnosis with HypoHidrotic Ectodermal Dysplasia. Mason is now years old and he is already advocating for his health with his mother's help. HypoHidrotic Ectodermal Dysplasia is a rare genetic condition characterized by the bodies inability to sweat, sparse hare, tooth loss and e…

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Menkes Disease With Daniel DeFabio From New York 1:00:12

9M ago1:00:12

1:00:12

Send us a text Nicknamed Kinky Hair Syndrome Menkes Syndrome is tested for in cases where the child isn't getting enough copper which can cause hair loss. It is often the first sign. It isn't on the newborn screening currently, but their are clinical trials for it. Go to clinicaltrials.gov for more information if your child has it. Babies won't sho…

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Pura Syndrome With Melissa From Washington 38:41

9M ago38:41

38:41

Send us a text In this episode I talk with Melissa from the Pura Syndrome Foundation about her child Taylor now 27 who was diagnosed with Pura Syndrome 2 years after it was discovered in 2014. Listen along and learn about this condition and Melkisa's roles with the Pura Syndromde Foundation over the years from working on the grants committee, to fu…

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Severe Methylene Tetrahydro Folate Reductase (MTHFR) With Grace from Florida 57:19

10M ago57:19

57:19

Send us a text In this episode I talk with Grace a parent of 2 children. Her youngest daughter Carson, who just turned 4 has Severe MTHFR. MTHFR is the rarest form of Homocystinuria. With Severe MTHFR they do NOT follow a low protein diet like classical HCU. In addition to being a parent with this rare condition, Grace also is a director on the boa…

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High Functioning Autism (Aspburger's Syndrome) With Kadin From Ohio 17:26

10M ago17:26

17:26

Send us a text Listen along as I talk with Kadin about High Functioning Autism. Listen to Kadin's diagnosis journey. Find out about the signs and symptoms in both children and adults, How Kadin is getting along in college, and is aspirations for the future. I am trying to turn this podcast into a Nonprofit, and I need board members if you are inter…

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Rare Connection Episode 11: Acoustic Neuroma with Shari from California 46:52

11M ago46:52

46:52

Send us a text Shari was diagnosed with an acoustic neuroma (a rare benign tumor) In the removal of this tumor she had a stroke. In her book "When Life Gives You Lemons, Make Cranberry Juice" She talks about the removal of this tumor and how it will forever impact her life. Shari sees the Good things in life as the sweet "Cranberries" and the Bad t…

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Rare Connection Episode 10: AI Assist 30:31

11M ago30:31

30:31

Send us a text Meet Joel Cofounder of Endurant Health. Endurant Health has developed an AI tool to help diagnose rare disease patients. Joel's mother was diagnosed with a rare genetic metabolic condition called Homocystinuria. (HCU). Together with friends who are undergoing similar battles finding proper diagnosis they founded Endurant Health to Ai…

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Rare Connection Episode 9: Malan Syndrome with sky from Oklahoma 30:21

11M ago30:21

30:21

Send us a text Join me as I talk to Sky , mother of 3 children. about her daughter Presley's diagnosis with Malan Syndrome. Malan Syndrome is an overgrowth disorder that is considered as ultra rare. Their are only 300 cases of this condition world wide. Join me as I ask about her 8 year journey to diagnosis, Symptoms, Her role in Co-founding The Ok…

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Rare Connection Episode 8: Mast Cell Activation Syndrome & Growth Hormone Deficiency 1:02:59

11M ago1:02:59

1:02:59

Send us a text Join me as I welcome Jessica back to talk about Mast Cell Activation Syndrome and Growth Hormone deficiency. Learn about how they are diagnosed symptoms, and triggers Support the showBy Joanna

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Primary Sclerosing Cholangitis,& Trigeminal Neuralgia 1:05:51

1y ago1:05:51

1:05:51

Send us a text In this episode I talk with Christina, Who is the host of Speaking in Spoons and a patient with Primary Sclerosing Cholangitis (PSC), Trigeminal Neuralgia and Hemiplegic Migraines. The aim of this podcast is to connect those with similar conditions, educate medical professionals, and hopefully help find treatments and clinical trials…

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Rare Connection Episode 6: Calciphylaxis and Multiple Endocrine Neoplasia Type 1 1:33:06

1y ago1:33:06

1:33:06

Send us a text Dubbed the man who died twice and Hod brought back to life, Kevin Hills Story appears in 45 national and international Newspapers and Magazines. Listen along as I talk with Kevin about his medical conditions Calcifylaxis and Multiple Endocrine Neoplasia Type 1(MEN1). You can see the full video on YouTube on my channel Rare Chef also …

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Rare Connection: Episode 5: Congenital Central Hypoventilation Syndrome (CCHS) 29:12

1y ago29:12

29:12

Send us a text In this episode I talk with Nico who has Congenital Central Hypoventilation Syndrome (CCHS). Nico worked for CCHS Network inc. which his mother started. He revamped the website and planned a global conference for CCHS patients. After losing friends to CCHS he decided to branch out and work with people with disabilities at large. He b…

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Rare Connection Episode 4: Pyruvate Dehydogenase Defiecency (PDCD) 35:44

1y ago35:44

35:44

Send us a text In this episode I talk with Layna (parent and advocate with Hope for PDCD https://www.hopeforpdcd.org/) . PDCD is a inherited metabolic condition that has to do with Carbohydrate metabolism. They follow the Keto diet. Layna is responsible for fundraising, education, social media, education, and advocacy. She has a youtube channel of …

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Rare Connection Episode 3: GastroParesis and POTS 24:26

1y ago24:26

24:26

Send us a text Join me as I talk with Author, Student and Patient Charleigh. Charleigh has Gastroparesis (GP) and Post Orthostatic Tachycardia Syndrome (POTS). She is also a student at Pratt University and an Author of 2 books Rule 25: Don't Forget the Target and Demon Scout. In this episode Charleigh talks about her symptoms of both POTS and GP, D…

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Rare Connection Episode 2 Wendy Psoriatic Arthritis 46:46

1y ago46:46

46:46

Send us a text In this episode, I talk with Wendy about her life as a Special Education Teacher, and yoga instructor and her new book "Kiss You Love, Goodbye" Wendy talks about her how she found her knew purpose in life after she wasn't able to teach again. How she adapted to life after teaching. Support the show…

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Rare Connection Episode 1: Homocystinuria (HCU) Jenifer from Cananda 23:14

1y ago23:14

23:14

Send us a text In this episode Jenifer tells her story about how she was diagnosed with Homocystinuria (HCU) and how she was diagnosed. She will tell where she goes for help and other resources that have helped her along the way. At 55 Jenifer is one of the older HCU patients. At one time they thought that those with Homocystinuria wouldn't live pa…

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Nutrition Equity Episode 13: Diabetes Awareness month With Jessica 43:22

1+ y ago43:22

43:22

Send us a text In this episode of Nutrition Equity I talk with Jessica, a patient with both Classical Homocystinuria and Diabetes. Jessica will talk about the complexities of dealing with two conflicting conditons. Homocystinuria requires a low protein diet and Diabetes requires you to watch your carbs and sugar intake. While nuts aren't allowed fo…

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Nutrition Equity Episode 12: HCU Awareness Month Cobalamin G Heather Parent 1:00:18

1+ y ago1:00:18

1:00:18

Send us a text In this episode I talk with Heather a parent of a child with Cobalamin G. Cobalmin disorders are named for the order in which they were discovered. Some Cobalmin disorders fall under the Homocystinuria Family, some are Methyl Malonic acidemia's and some are both. They are tested for on Newborn screening, but often missed. Heather's c…

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Nutrition Equity Episode 11: HCU Awareness Month Bharat Assistant Taste Connections 21:34

1+ y ago21:34

21:34

Send us a text In this episode, Bharat disscuses his personal journey as an Homocystinuria (HCU) patient, his role at taste connections (one of the medical food companies). Bharat is one of the few classical Homocystinuria patients that is also diabetic. He discusses the types of restaurants he likes and the coverage in his state for medical food, …

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Nutrition Equity Episode 10: Danae Bartke Exeutive Director HCU Network America 40:42

1+ y ago40:42

40:42

Send us a text This month is Homocystinuria (HCU) Awareness Month. Today I am joined by Danae Bartke the Executive Director of HCU Network America. Two of the three types of Homocystinuria would be covered if the Medical Nutrition Equity Act were to pass. Currently we are trying to get this crucial bill reintroduced into congress again. In this epi…

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Nutrition Equity Episode 8: Short Bowel Syndrome 32:39

1+ y ago32:39

32:39

Send us a text In this episode I talk with Andrew Jablowski Founder of the Short Bowel Syndrome foundation inc. Andrew is a patient advisor and physician advisor for NAIA Pharmacuticals formerly Shire pharmacuticals. Andrew will talk about his life with Short Bowel Syndrome, his job as a physician and patient advisor, and his foundation. You can le…

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Nutrtion Equity Episode 9: Classical Homocystinuria (HCU) Newborn Screening Awareness Month 49:30

1+ y ago49:30

49:30

Send us a text Listen in as I talk with Valerie a mother of 18 year old Summer who was diagnosed late with Classical Homocystinuria. A rare genetic condition that can be fatal if not caught early. As a result of her late diagnosis Valerie's child Summer had strokes in utero which caused learning disabilities. You can learn more about Homocystinuria…

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Nutrition Equity Episode 7: Cobalamin Disorders 53:04

1+ y ago53:04

53:04

Send us a text Listen as I talk with Brittany, parent of two children with Cobalamin G and the head of the Cobalamin Steering Committee for HCU Network America. Brittany will discuss her reasons for advocacy, her role on the steering committee, and the issues faced by those with Cobalamin Disorders. Support the show…

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Nutrition Equity Episode 6: Tyrosinemia (TYR) 31:35

1+ y ago31:35

31:35

Send us a text In this episode of Nutrition Equity I talk with Andrew. A Tyrosinemia patient. Listen along as we learn about Andrew's battles with Tyrosinemia and what it is like to live with this rare condition. Learn about the issues he and others have faced with getting medical foods and formula. What it is like now vs When he was a child. Suppo…

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Nutrition Equity Episode 5: Eosiniphilia 26:25

1+ y ago26:25

26:25

Send us a text Listen in as we talk with patient and biologist Aneta about Eosinophilia. Thanks to Aneta for doing this episode last minute because of a cancelation with the original person I was going to interview. Support the showBy Joanna

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Nutrition Equity Episode 4 : Cystic Fibrosis (CF) 1:03:42

2y ago1:03:42

1:03:42

Send us a text In this episode we talk with Jessica a Cystic Fibrosis patient about her journey with CF, listen in as she discuses here experiences growing up with CF and discusses some of the common misconceptions of CF. She will also discuss her diet and a medical formula and medications that she puts through her g-tube. If you are reading this p…

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Susan MSUD chair for PKU and Allied Disorders talks about MSUD 24:42

2y ago24:42

24:42

Send us a text This video is the third episode of Nutrition Equity a podcast devoloped to promote the Medical Nutriiton Equity Act . In this episode we talk with Susan Neeleman of the MSUD Community. Susan is the Vice President of the New England Connection for PKU and Allied Disorders (NECPAD), the editor cf tShe is a powerful leader in the MSUD a…

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Nutrition Equity Episode 2 PKU with Jill 1:08:36

2y ago1:08:36

1:08:36

Send us a text Support the showBy Joanna

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Kelly the National Homocystinuria representative 42:25

2y ago42:25

42:25

Send us a text In this episode we talk ro Kelly Waters the national Homocystinuria (HCU) Represntative about Homocystinuria and her advocacy work. We also discus her symptoms, diagnosis, and how you can help advance treatment. I am working on a visual version of this podcast also which I hope to have up in a couple weeks. It had to be retaped. Supp…

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The Last EVER Episode of the Big Life Kids Podcast! 9:39

3y ago9:39

9:39

In our final episode, Zara and Leo face the ultimate challenge... the Believemobile is GONE! Join us in our farewell episode as we discover how to deal with big life changes. Additional show notes available at biglifejournal.com/podcast Credits: Produced by Alexandra Eidens and Big Life Journal team. Written and directed by Sarah Cyrano. Sound desi…

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