Best Zebra Developers Podcasts (2025)

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Partial Trisomy 8Q Duplication Syndrome Wuth Saida From California 31:07

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13d ago31:07

31:07

Send us a text In this powerful episode of Rare Connection, Joanna Ball speaks with Saida Mahoney — a beauty queen, author of nine books, athlete, performing artist, and National Rare Disease and Disability Advocate living with Partial Trisomy 8q Duplication Syndrome, an ultra-rare genetic condition. Saida shares her journey growing up with neurolo…

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This is how we built...an interactive longbow exhibit 22:08

15d ago22:08

22:08

Ben Templeton is a writer, creative director and facilitator in the field of games and playful technology. For almost 20 years Ben has helped organisations around the world create fun ways of bringing audiences together to interact with art, culture and science. The Robin Hood Experience at Nottingham Castle is a series of immersive arcade games in…

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Paula Bray (State Library Victoria) on the power of experimentation, the importance of advocacy and generosity, recognising that some things take time, and the value of clear and joined-up strategy 42:26

27d ago42:26

42:26

A great conversation with Paula Bray. Paula is Chief Digital Officer at State Library Victoria in Melbourne. Over the last twenty years Paula has held digital leadership roles at organisations including the State Library of NSW, Powerhouse Museum, Art Gallery of NSW and the Australian National Maritime Museum. Innovation and experimentation runs th…

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Okur Chung Neuro Developmental Syndrome (OCNDS) With Jillian from Massachusetts 30:13

28d ago30:13

30:13

Send us a text In this episode of Rare Connection, I talk with Jillian Kavanagh, a nurse practitioner and parent to Ellie, who was diagnosed with Okur-Chung Neurodevelopmental Syndrome (OCNDS) at age 4. With only about 300 known cases worldwide, OCNDS is an ultra-rare genetic condition caused by variants in the CSNK2A1 gene. Jillian shares the chal…

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Brandon Powers on dance, technology, immersive experiences, reframing the role of the audience, working with engineers, and the importance of translation 45:00

2M ago45:00

45:00

A chat with New York-based creative director and choreographer, Brandon Powers. Brandon works with technology to create experiences across physical and virtual spaces. We talked about his early experiences with technology, inter-disciplinary teams, the various ways that technology and virtual spaces can enhance and extend experiences for both artis…

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NEDAMSS With Liz From Florida 38:26

3M ago38:26

38:26

Send us a text 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 therapy. We discuss what this means for the rare disease community, the hope it brings to families, and the pa…

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Global Drug Access For Rare Diseases With Aayush Goyal of MedsPartner 37:52

3M ago37:52

37:52

Send us a text 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 episode of Rare Connection, host Joanna Ball sits down with Aayush Goyal, founder of MedsPartner, a…

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Palliative care with Anne Front LMFT from California 41:22

3M ago41:22

41:22

Send us a text 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 episode of Rare Connection, host Joanna Ball welcomes Ann, a licensed psychotherapist, breast cancer sur…

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TNRC6B With Keyundra From Arkansas 59:12

3M ago59:12

59:12

Send us a text 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: 🫁 Laryngomalacia – a rare airway disorder 🦠 Neutropenia – a rare immune disorder 🧬 TNRC6B gene mut…

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Idiopathic Intercranial Hypertnsion with Stephanie From Maryland 46:47

3M ago46:47

46:47

Send us a text 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 disorder involving increased pressure around the brain with no detectable cause. Stephanie opens up about the long pat…

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Neil Williams (BFI) on transforming organisations through digital, comparisons between the civil service and the cultural sector, working in the open, and intentionally not empire-building 57:19

3M ago57:19

57:19

A conversation recorded in-person (hurray!) with the BFI's Exec Director of Technology and Digital Transformation, Neil Williams. Neil writes a regular 'fortnight notes' post on his blog, which you can find here neilojwilliams.netBy Digital Works

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CLCN6 With Paul From California 54:40

4M ago54:40

54:40

Send us a text 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 began with developmental delays and years of unanswered questions. After extensive genetic testing, his family finally received a …

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Sarcoidosis With Regina From Indiana 49:32

4M ago49:32

49:32

Send us a text 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. After her sarcoidosis diagnosis, Regina launched UniquelySarc, a handmade earring line dedicated to raising sarcoidosis awa…

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Glutaric Acidemia 1 with Serena From New Zealand 2nd Anniversary episode 1:18:06

4M ago1:18:06

1:18:06

Send us a text 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 Deficiency Syndrome, a rare metabolic disorder that impairs glucose transport to the brain — leading to seizures and neuro…

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Tash Willcocks (TPX Impact) on navigating uncertainty, intellectual humility, leadership in turbulent times, why zebras don't get ulcers, the importance of structure in enabling agility, how to actually ... 56:03

5M ago56:03

56:03

A wide-ranging chat with Tash Willcocks (Head of Learning Design at TPX Impact) on organisational culture, leadership, and how to deal with change and uncertainty. Tash mentioned a whole load of ideas, articles, books, and thinkers - a few of which I've linked to below: Tash's Medium lives here: https://medium.com/@tash-willcocks This is the first …

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Ank 3 With Tami from Kansas 32:00

5M ago32:00

32:00

Send us a text 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 multiple conditions impact their daily life, and how she balances caregiving with her work in early chil…

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Mental Health and Rare Disase with Frank From New York 49:07

5M ago49:07

49:07

Send us a text 🧠 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 to make support more accessible for our community. 🌍 Living with sarcoidosis and other chronic conditions, Frank …

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Orphan Disease of HLA-B27 With Brenda From Florida 53:52

5M ago53:52

53:52

Send us a text 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 suffer from spontaneous tendon tears and systemic inflammation. One key clue? She is HLA-B27 positive, a …

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Judd Fink-Spiritual Path Coaching 34:08

5M ago34:08

34:08

Send us a text Hi, I'm Judd Fink From as early as the age of four, I’ve felt a profound connection to the universe, receiving intuitive messages from Source and those who have passed on. These insights have been my guiding light, shaping my life and empowering me to help others on their journeys. My purpose is to guide you toward this same clarity …

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Dan Reeves- From Alcoholic to reclaiming that which was lost! 26:04

5M ago26:04

26:04

Send us a text Hi, my name is Dan and I’m an alcoholic At 45 years of age my alcoholism and addictions came crashing down on me, I was facing 6-20 years in prison, I had given away a 17 year marriage and was on the verge of losing everything. Even with those consequences hovering, I was unable to stop consuming the very chemicals that put me in thi…

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Neuromyoitis Optica with Nicki From New York 1:36:49

6M ago1:36:49

1:36:49

Send us a text 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 you're a patient, caregiver, medical professional, or just curious—this conversation brings rare ins…

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Familial Adenomatous Polyposis With Jenny From Oklahoma 40:10

6M ago40:10

40:10

Send us a text 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 total colectomy at age 9, followed by a series of life-threatening complications that led to multiple surgeries, an i…

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Dr. Sharnael-The Science of Miracles: RE-Membering the Frequency of Love 27:47

6M ago27:47

27:47

Send us a text Dr. Sharnael Wolverton Sehon is a captivating multidisciplinary expert who seamlessly blends naturopathic /energy medicine, spirituality, and quantum science to empower individuals on their journey to wholeness. As the founder of True TV and author of five groundbreaking books, including her international best seller "The Science of …

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

6M 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

7M 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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Emma Keith (National Theatre) on NT Live, remote audiences, experimentation, learning, thinking about value, leadership, and the importance of pilots 56:27

7M ago56:27

56:27

A great chat with the National Theatre's outgoing Managing Director - Digital, Emma Keith. We talked about how digital practice has developed at the NT and how that differs from other performing arts organisations. The history of the NT Live programme, and the importance of pilots and testing ideas. The hidden value of digital infrastructure, remot…

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

7M 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

7M 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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Amazing Ways tech is helping people with rare disease! 1:03:35

7M 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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Beks Leary (National Gallery) on the challenges & opportunities of working in larger vs smaller teams, different ways of thinking about audiences, and the value of building meaningful relationships with ... 31:35

8M ago31:35

31:35

A chat with Beks Leary, Senior Social Media and Content Lead at the National Gallery in London. We talked about Beks's career, which has encompassed working at a diverse range of organisations including the Bush Theatre, BBC, and National Theatre before Beks's current role at the National Gallery. Beks explained the opportunities and challenges tha…

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Noah Tetzner-From a bullied kid to a successful podcast producer! 27:41

8M ago27:41

27:41

Send us a text Join us on a heartfelt exploration with Noah from his roots in Green Bay, Wisconsin, where he was homeschooled in an evangelical Christian environment, Noah found solace and self-expression in the world of community theater. His journey into podcasting began with a show on Viking history, which surprisingly opened up opportunities fo…

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

8M 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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Elise Morgan-Dynamic life coach, author, speaker, podcast host, and healer. 59:06

8M ago59:06

59:06

Send us a text Elise Morgan is a former personal trainer and IFBB Professional Fitness Athlete, turned dynamic life coach, author, speaker, podcast host, and healer with a bold and sassy yet compassionate approach to personal empowerment. With a master's degree from the school of hard knocks and certifications in life coaching, NLP, and sacred cere…

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

8M 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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Heather Murphy-Certified somatics coach, trauma informed breathwork facilitator and expressive arts. 51:20

8M ago51:20

51:20

Send us a text Heather Murphy is a certified somatics coach, trauma informed breathwork facilitator and current expressive arts therapist in training. She wants you to know that whatever is desired by you is destined by you. You have the power to create and manifest the life of your dreams. And through somatics, energetics and expressive arts she w…

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Hemochromatosis With Michael from Guatemala 2:04:22

8M 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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Mike Keating (Art Fund) on the collaborative development of AI policy, balancing the priorities of being both a membership and sector support organisation, and the impact of COVID on Art Fund's digital ... 35:44

9M ago35:44

35:44

A conversation with Art Fund's Associate Director of Digital Experience, Mike Keating. Most of our chat focused on Mike's relatively recent work in developing Art Fund's first AI policy. The collaborative, open, and pragmatic approach that Mike and colleagues took to this work feels like a useful model that other cultural organisations could borrow…

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Alan Gompers- From Maximum Security to the True Meaning of Freedom! 1:13:11

9M ago1:13:11

1:13:11

Send us a text Alan Gompers is a nationally recognized author, insightful lecturer, expert on recidivism, mentor to at-risk youth, and beloved authority on meditation and Self-Actualization. Prior to his startling transformation in prison, Alan’s insatiable need for recognition and power drove him to make and lose fortunes on Wall Street, betray fa…

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Sofia Risberg, Ph.D-Former Historian, Animal Communication and Healing Insights. 36:27

9M ago36:27

36:27

Send us a text Sofia Risberg, Ph.D. is a former historian who started learning BodyTalk in 2020. After taking courses, she has been intuitively guided to use that modality as a basis to work primarily with animals to help them find assistance with anxiety, trauma, ancestral patterns, and other issues that affect them. Sofia’s been on a deep spiritu…

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Acromegaly With Risa From Colorado 1:04:54

9M 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

9M 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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Abby Havermann-Coach, Speaker & Writer 48:45

10M ago48:45

48:45

Send us a text A psychotherapist turned coach, Abby Havermann is a dynamic speaker, skilled trainer and an illuminator of the unconscious self-betrayals that drive our everyday challenges. Combining psychology, neuroscience, and ancient wisdom, she teaches you how to rewire habitual patterns of thought, emotion, and behavior to thrive instead of su…

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Bianca Rosales-A BADASS Alchemist, Herbalist and Self Healing Mentor 39:54

11M ago39:54

39:54

Send us a text Bianca Rosales is a BADASS Alchemist, Herbalist and Self Healing Mentor on mission to help individuals remember their divinity and their souls path of purpose by taking practical steps in becoming the badass divine being they already are. Through Breathwork, Ancestoral mentorship, DNA Clearing, Activations, Subliminal reprogramming a…

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Superficial Siderosis With Rori From Texas 1:13:08

11M 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

12M 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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Lilli Martin-Animal Communicator 42:20

12M ago42:20

42:20

Send us a text I stand on the outside - watching and listening in - because the acoustics are much better when isolated from human noise. I prefer to spend time one-to-one with the animals I read, or to work through the silence of photographs. My time with the Hopi came about because of this nature; they were able to recognize me in part by my hang…

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Homocystinuria With Erika from Florida 48:14

1y 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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Michael Morgan-Retired 30yr Police Officer & Plant based Medicine advocate 50:25

1y ago50:25

50:25

Send us a text Michael grew up in N Bellmore, NY with his parents and younger sister. After graduating from Hofstra University w/ an Accounting degree, he realized before lunch time on his FIRST day at work that an accounting career would NOT be in his future. After some deep introspective thinking, he decided that he needed to make a difference in…

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Trixi Tschiedel Menhardt-Mental Fitness and Leadership Coach 37:47

1y ago37:47

37:47

Send us a text I am a mental fitness and leadership coach, with a deep business background in medical devices, healthcare IT and life sciences, leading large scale sales and technical projects internationally. Since 2012, as a Professional Certified Coach, I focus on mental wellness, navigating uncertainty and bringing joy and success to both emerg…

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

1y 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. Chapterr Markers 00…