Best Aayush Podcasts (2026)

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New Drug for RDEB Skin Condition With Professor Mark Lowdell From The UK 37:43

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16d ago37:43

37:43

Send us a text Iss rare disease journeImagine waking up every day knowing even a light touch could cause your skin to tear or blister. That’s the reality for children and adults living with Recessive Dystrophic Epidermolysis Bullosa (RDEB) — a severe rare genetic condition where skin and mucous membranes are extremely fragile. In this episode of Ra…

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Dyscalculia With Michelle From Pensylvania 34:09

1M ago34:09

34:09

Send us a text In this episode of Rare Connection, Joanna sits down with writer, photographer, paraeducator, and disability advocate Michelle Steiner to talk about life with dyscalculia, an often-misunderstood learning disability that affects number sense and math. Michelle shares her journey from being told she “couldn’t” — couldn’t go to college,…

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

3M 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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Okur Chung Neuro Developmental Syndrome (OCNDS) With Jillian from Massachusetts 30:13

4M 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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NEDAMSS With Liz From Florida 38:26

5M 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

5M 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

6M 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

6M 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

6M 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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Android MCP SDK with Jason Pearson 46:15

6M ago46:15

46:15

Today we venture in the world of AI with Jason Pearson and the Android MCP (Model Context Protocol) SDK, a new library that allows Android developers to build apps that can communicate with AI models more effectively. While this library is still in its early days, this solution has a lot of potential to revolutionize how we interact and debug our A…

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CLCN6 With Paul From California 54:40

7M 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

7M 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

7M 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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Ank 3 With Tami from Kansas 32:00

7M 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

7M 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

8M 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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Compose Hot Reload with Sebastian Sellmair 56:22

8M ago56:22

56:22

Since it’s KotlinConf week we do have a special new episode for you folks! 🎁 Today we have on stage Sebastian Sellmair, software engineer at JetBrains, and he’s here to talk about Compose Hot Reload. With Compose Hot Reload, you can make changes to your Jetpack Compose code and see the results instantly in your app without having to restart it! Thi…

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

8M 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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Bit with Gilad Shoham 1:02:53

8M ago1:02:53

1:02:53

We’re back with a fresh new episode! 🍞🎉 Today, we sit down with Gilad Shoham, Head of Engineering at Bit.dev In this episode, Gilad will walk us through the fundamentals of Bit, how it enables composable architectures, and how development teams are using it as part of their workflow. We will touch on common challanges that developers are facing now…

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Familial Adenomatous Polyposis With Jenny From Oklahoma 40:10

8M 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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From Researcher to Lymphocytic Colitis Patient Ben From South Dakota 1:29:05

9M 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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Aurora Store with Aayush Gupta 44:08

9M ago44:08

44:08

We’re back with a fresh new episode at The Developer’s Bakery! 🎉 In this episode, we chat with Aayush Gupta, the maintainer of Aurora Store, a popular alternative to the Google Play Store. Aayush will share what makes Aurora Store unique, including its features, security measures, and how it compares to other similar stores like FDroid. We’ll deep …

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Unnamed Chromosomal Disorder With Melissa From Minnesota 43:56

9M 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

10M 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

10M 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

10M 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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http4k with David Denton 43:00

10M ago43:00

43:00

Time for a new episode of The Developers’ Bakery! 🎉 In this episode, we dive into the world of http4k with David Denton, exploring how you can treat your server as a function! Thanks to Kotlin expressivity, http4k allows you to develop server applications that are easy to test and maintain. David created and maintains the http4k together with Ivan …

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

10M 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

11M 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

11M 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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Astro with Elian Van Cutsem 44:45

11M ago44:45

44:45

In this episode of The Developers’ Bakery, we explore Astro, the modern web framework, with Elian Van Cutsem, one of its maintainers. Elian will walk us through Astro’s content-first approach, how it compares to other web frameworks, and its support for server-side/hybrid rendering. We also dive into Astro’s governance model and the challenges of m…

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Acromegaly With Risa From Colorado 1:04:54

12M 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

12M 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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KotlinPoet with Egor Andreevich 45:01

12M ago45:01

45:01

Let’s kickoff 2025 with a fresh new episode of The Developers’ Bakery! 🎉 Today, we talk about KotlinPoet with Egor Andreevich.KotlinPoet is a library from Square used to generate Kotlin code. It’s a great tool to generate code at compile time, and it’s usedby many libraries and frameworks for Android and not only. Egor has been involved with Kotlin…

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Daytona with Ivan Burazin 48:00

1y ago48:00

48:00

We’re back with another episode about developer tools! Today, we’re diving into Daytona 🚀, a self-hosted and secure open source development environment manager. I’m thrilled to have on stage Ivan Burazin, CEO and co-founder of Daytona, to tell us more about this project. Do you recall how much time it takes you to have your development environment …

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Superficial Siderosis With Rori From Texas 1:13:08

1y 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

1y 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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Excalidraw with Aakansha Doshi 40:59

1y ago40:59

40:59

Today we’re going to talk about Excalidraw 🎨, a web tool to sketch diagrams with a hand-drawn style. I’m glad to have on stage Aakansha Doshi, one of the maintainer of Excalidraw, to tell us more about this project.Aakansha will tell us the story of Excalidraw, how it evolved over time, and its secret to achieve the distinctive hand-drawn style. We…

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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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Chucker with Nicola Corti 40:04

1y ago40:04

40:04

It’s time for another special episode, 90! Together with our own Nicola, we’re diving into the world of Chucker, an open-source library that helps you debug network requests in Android. With Chucker you can simply inspect the HTTP and GraphQL requests and responses, visualize the body such as JSON or images, and even export them to share with your …

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

1+ y 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…

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

1+ y 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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Vyas to Wimbledon! 🎾 1:46:26

1+ y ago1:46:26

1:46:26

In this episode we talk to Rahul, Pilani'05 and ex tennis team captain! He has been an umpire in 9 Wimbledons and holds the unofficial record of highest time spent on the Wimbledon court as a married couple. We discussed his computer vision hawk eye project in college, hawk eye in tennis, how top players act in tough moments and much more.. Tune in…

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

1+ y 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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Language Servers with Gorkem Ercan 51:35

1+ y ago51:35

51:35

We’re back with another episode about developer tooling and this time we’re diving into the world of Language Servers! We have the pleasure to have on stage Gorkem Ercan, the CTO of Jozu and member of the Eclipse Foundation Board. Gorkem will walk us through his journey in the world of Language Servers, from writing Visual Studio Code plugins to bu…

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

1+ y 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

1+ y 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

1+ y 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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Charty with Himanshu Singh 34:48

1+ y ago34:48

34:48

It’s time to spotlight another amazing Android library in this episode of The Developers’ Bakery! Today, I’m joined by Himanshu Singh, author and maintainer of Charty. Charty is a chart library entirely written for Jetpack Compose. In this episode, Himanshu will walk us through the complexities of building custom UI libraries and his passion for op…

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

1+ y 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…