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Zebra Developers Podcasts

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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 ...
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Talking about all the different things that 'digital' means in the arts, culture and heritage sectors. Tales of success and failure, interrogating the shiny new things and looking at what works (or not) and why, Interviews with digital folks working across the sector and beyond, in-house, consultants, funders, and more.
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Big Life Kids Podcast

Big Life Journal

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The Big Life Kids podcast teaches children to stay resilient, believe in themselves, and face life's challenges with confidence! In each episode, Zara and Leo travel the world to discover the living heroes that are making a difference in the world today. Each episode is reviewed and approved by a licensed therapist to ensure that the social-emotional learning and growth mindset lessons covered on this children's podcast are science-backed and accurate. Ideal for children ages 5-10. The podca ...
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The Quantum Alchemist Master podcast encourages the listeners to Alchemize their life by looking within. It captures conversations exploring our human existence, and beyond… Focusing on Existentialism, Spirituality, The Hero’s Journey, & Multidimensional Development: A Philosophy of Freedom and Connection. Becoming, expanding our awareness and consciousness through intentional acts of creation and dialogue. Every conversation is a chance to empower one another, sharing perspectives that shap ...
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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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A conversation with Tim Woodall, the former Director of Marketing at The Philharmonia, and the current Head of Direct to Consumer Marketing at independent publishing house, Faber and Faber. It was interesting to hear Tim's reflections on what the publishing world could learn from the arts, and vice-versa, the value of clear priorities, the lessons …
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Aurora Classroom, from the Aurora Orchestra, began as an idea to convert a live children’s storytelling concert into a classroom resource during the pandemic. In this conversation with Aurora Orchestra's Learning Director, Rebecca Barnett we hear how over the last five years it has grown into a comprehensive creative learning platform, showcasing A…
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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 evening, on the Eat It series of The Bow, our discussion will center on Okra. Regardless of your preference for the dried, fresh, or roasted version, Okra's relationship with Zobo and the Hibiscus flower is an interesting fact. Okra is also beneficial in the fight against malnutrition. Join me as we explore this topic.Lets do this....lets eat …
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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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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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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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Tonight, we will delve into ATTITUDE(as a follow-up discussion on past episodes, including Courtesy, Greetings, Integrity, and Loyalty). The UN SDGs are built around the core principles of People, Planet, and Prosperity. To prosper and develop our planet, we must cultivate a good attitude. Let us endeavor to be nice and do good. A true leader stand…
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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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IYD 2025 with Felicia Gbuuka. This week, the IYD 2025 event in Abuja featured Felicia Gbuuka, a 34-year-old mother and farmer from Guma in Benue State, who has demonstrated exceptional diligence and tech expertise in her farming endeavors. As reported by the International Fund for Agricultural Development (IFAD), Felicia launched her farming initia…
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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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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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THE FISH STORY: THE FINAL ANALYSIS Tonight, we build upon our November 4 and 11, 2023 podcasts on fish farming. These Nigerian children have concluded that commencing fish farming with a limited number of baby fishes is the most sensible way to mitigate poverty, ensure familial well-being, and produce household income to acquire food. We thank Zhir…
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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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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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On Saturday 19 July 2025, Abuja held its own Feet Of Grace Foundation charity walk and this also marked 10years of the organizations operation. Feet Of Grace has assisted women without limbs in acquiring limbs, supporting those that are running SMEs and helping some of these ladies in school . This is a worthy cause that Feet Of Grace Foundation is…
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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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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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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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Presently, amidst the plethora of disheartening news, we are revisiting NEWS OF AVOIDANCE (2) as a sequel to our episode from last year. Empathy is vital, but we must also be cautious in our consumption of media. Development acts as a catalyst, uniting people from all walks of life, regardless of their social standing, educational background, or ec…
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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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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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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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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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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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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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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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