March Forward

March.ai
  • 0.0(0개의 평가)
  • 의학

Welcome to the March Forward podcast, a space dedicated to the rare disease community. We understand the unique challenges you face, from the 'diagnostic odyssey' to navigating complex treatments and the emotional toll of caregiving. Our podcast aims to provide clear, trustworthy, and in-depth information, fostering hope and support as we explore the latest advancements in rare disease research and care.

  1. 1월 5일

    What Really Happens When You Join a Clinical Trial? 5 Patient Stories

    Send us a text What's it actually like to be in a clinical trial?  Past all the paperwork and medical talk, it's really about people taking big risks because they're hoping for something better. Just thinking about trials can bring up a lot of feelings, and that's completely normal. ❤️ In this episode of March Forward, we're sharing the real stories of five people who decided to join clinical studies. Each person's experience was different, but they all show just how strong patients can be and how much we lean on each other.  You'll hear about someone who dealt with scary side effects, another person whose life completely turned around, and the quiet heroes who participated knowing it might not help them but could help others down the road. 💪 We think hearing from people who've actually been there can help the rest of us feel less scared and more prepared. So let's listen to what they learned and give their experiences the respect they deserve. ❤️ Subscribe to March Forward if you haven't already. Drop a comment and tell us what you think. ✨ #ClinicalTrials #PatientStories #MedicalResearch #PatientAdvocacy #Hope #RareDisease #CancerResearch March Forward - Podcast by March.ai

    19분

  2. 2025. 12. 29.

    The Warning Signs of Caregiver Burnout.

    Send us a text If you’re a caregiver for someone with a rare disease, you are one of the unseen heroes of our community. Your strength, dedication, and love are the backbone of care, but we know this journey asks for everything you have, and then some. It’s easy to feel isolated, overwhelmed, and completely exhausted. It’s even easier to put your own needs last. But your well-being isn’t a luxury, it’s essential. ❤️ This episode is for you. We see you, we understand, and we want to walk with you toward finding balance and strength. Because you can’t pour from an empty cup. Here’s what we’ll explore together: What is Burnout, Really? We’ll break down the real signs of caregiver burnout—it’s so much more than just being tired—and discuss how it can affect your physical health.Navigating the Emotional Maze: A heartfelt conversation about managing the tough feelings that no one talks about: the guilt of needing a break, the grief, and the mix of love and frustration that is so common.Finding Your Lifeline: We’re sharing practical, realistic self-care strategies for when you have no time, and connecting you with resources like online support groups and respite care that can make a real difference.Our goal is to give you a moment to breathe and to equip you with tools that help. You are a vital part of our community, and you deserve to be supported. You are not alone on this path. Join the conversation in the comments below. Share a strategy that helps you, or simply let us know you’re listening. Together, we can support each other. 💪 #CaregiverSupport #RareDisease #MentalHealth #CaregiverBurnout #YouAreNotAlone #PatientCommunity #MarchCommunity #HealthPodcast #SelfCare #EmotionalWellbeing March Forward - Podcast by March.ai

    16분

  3. 2025. 12. 22.

    Can Holistic Medicine Help Your Rare Disease? What You Need to Know.

    Send us a text Living with a rare disease touches every part of your life, not just your body, but how you feel mentally and emotionally too. It makes sense that you'd want to explore every option to feel better. The tricky part is figuring out what might help and what's actually safe. 🤝 This guide is here to walk through it with you, giving you straight talk about holistic wellness so you can make choices that feel right for your situation. Here's what we'll dig into: The Big Picture: What does "holistic wellness" actually mean when you're dealing with a complex condition?What's Out There: Different things people try, from nutrition changes and meditation to acupuncture and herbal supplements.Keeping It Real: Honest talk about what might help, what to be skeptical of, and why your doctor needs to know about everything you're considering.We want to give you solid, caring information without the hype or false promises. There's real potential in some of these approaches, but there are also things to watch out for.  Available resources and research: https://scispace.com/pdf/integrative-medicine-as-a-new-treatment-model-and-the-future-3lf8dedgeb.pdf https://www.mdanderson.org/treatment-options/complementary-and-integrative-medicine.html https://www.ncbi.nlm.nih.gov/books/NBK11796/ https://www.ted.com/talks/jeff_chen_why_science_needs_to_get_behind_natural_medicineDrop a comment below and tell us what's worked (or hasn't worked) for you. We're all learning from each other. ❤️ #HolisticHealth #IntegrativeMedicine #RareDisease #PatientEmpowerment #WellnessJourney #MindBodyHealth #PatientSupport #MarchCommunity #YouAreNotAlone March Forward - Podcast by March.ai

    15분

  4. 2025. 12. 15.

    Is a Clinical Trial the Right Path for My Rare Disease?

    Send us a text Considering a clinical trial can bring up a lot of emotions, hope, uncertainty, and so many questions. For those in the rare disease community, it often represents a path toward new possibilities, but it’s a big decision that can feel complex. You don't have to figure it all out by yourself. 🤝 We believe you deserve clear, honest information to help you find the path that’s right for you. We created this guide to walk with you through the process, explaining things in a way that’s easy to understand. Here’s what we’ll explore together: The Basics Explained: What exactly is a clinical trial and what do the different "phases" mean for you?The Rare Disease Difference: Why these trials are unique and how researchers are adapting to help our community.A Realistic Look at Benefits & Risks: We'll cover the hope of accessing new treatments and also be transparent about potential side effects and practical challenges.Support for Your Journey: Learn about the people and groups dedicated to protecting you, and the resources available to help with costs and logistics.Remember, you are not alone. Join the conversation in the comments below, and let's continue to learn and support one another. ❤️ Available resources and research: https://pmc.ncbi.nlm.nih.gov/articles/PMC12000536/https://pmc.ncbi.nlm.nih.gov/articles/PMC4124116/https://journal.emwa.org/clinical-trials/the-unique-challenges-of-clinical-trials-in-rare-disease-a-regulatory-writer-s-perspective/ https://everylifefoundation.org/wp-content/uploads/2022/01/Guide-to-Patient-Involvement-FINAL-COMPLETE-GUIDE-Rev.pdfhttps://clinical.research.fsu.edu/study-support-services/clinicaltrialsgov-administration/navigating-clinical-trials/#ClinicalTrials #RareDisease #PatientSupport #MedicalResearch #RareDiseaseAwareness #PatientEmpowerment #MarchCommunity #YouAreNotAlone #HealthLiteracy March Forward - Podcast by March.ai

    16분

  5. 2025. 12. 09.

    Can Personalized Medicine Finally Help Rare Disease Patients?

    Send us a text What if your treatment was as unique as your own DNA? 🧬 For so many in the rare disease community, the dream of a therapy tailored specifically to their body is now becoming a reality. This isn't science fiction; it's the hopeful, rapidly advancing field of personalized medicine. ✨ In this episode of March Forward, we explore how personalized medicine is transforming the approach to rare diseases. We move beyond "one-size-fits-all" solutions to discuss treatments designed for your unique biological blueprint. We’ll also look at real-world examples like Zolgensma, Spinraza, and Trikafta that are already changing lives by targeting the root cause of a condition. 💊 Plus, we'll discuss the challenges that still exist, from access and cost to the ongoing need for research, and how AI is paving the way for an even more hopeful future. Don't forget to subscribe to March Forward for more deep dives. Like this episode, and share your thoughts or questions in the comments below.  Relevant research and resources:  https://pmc.ncbi.nlm.nih.gov/articles/PMC12156693/ https://pmc.ncbi.nlm.nih.gov/articles/PMC8958924/ https://pmc.ncbi.nlm.nih.gov/articles/PMC7709101/https://www.frontiersin.org/journals/physiology/articles/10.3389/fphys.2025.1649114/pdf #PersonalizedMedicine #RareDisease #PrecisionMedicine #GeneTherapy #GeneticConditions #PatientAdvocacy #MarchForward  March Forward - Podcast by March.ai

    17분

  6. 2025. 12. 01.

    Can AI Accelerate Drug Repurposing for Rare Diseases?

    Send us a text What if we told you that AI is helping us find new uses for existing medicines, bringing us closer to treatments for rare diseases? 🔍 🔬  In this episode of March Forward, we gently explore how Artificial Intelligence is transforming drug repurposing, offering a new horizon of hope for patients and families navigating rare conditions. We discuss how AI sifts through vast amounts of data to uncover hidden connections between existing drugs and rare diseases, significantly speeding up the journey to potential treatments.💡 Learn how this innovative approach reduces development time and costs, and hear compelling success stories where AI has made a life-saving impact for previously untreatable conditions. We’ll also address the challenges, such as data quality and ethical considerations. Join us as we explore how AI is not just a scientific tool but an economic enabler, fostering a more equitable landscape for drug development and transforming previously "unprofitable" areas into feasible therapeutic targets. Our goal is to help you feel seen, heard, and empowered on your unique journey. 💜 Remember, you are not alone, and together, we can move forward toward a future where more rare diseases have treatments. ❤️‍🩹 Don't forget to subscribe to March Forward for more insights. Like this episode, and share your thoughts or questions in the comments below – we're all in this together. Relevant links & Resources  https://pmc.ncbi.nlm.nih.gov/articles/PMC11645266/ https://pmc.ncbi.nlm.nih.gov/articles/PMC11719738/ https://www.medangel.org/ai-drug-detective/ #AIDrugRepurposing #RareDisease #ChronicIllness #PatientCommunity #MedicalAdvancements #AIinHealthcare #DrugDiscovery #HopeForRareDiseases #MarchForward #MarchCommunity #HealthPodcast #PatientEmpowerment #YouAreNotAlone March Forward - Podcast by March.ai

    26분

  7. 2025. 11. 24.

    How Can We Cope with the Mental Toll of Rare and Chronic Illness?

    Send us a text Have you ever felt that living with a rare or chronic illness comes with an unseen weight, a battle fought not just in the body, but in the mind too? 🧠 In this episode of March Forward, we gently explore the profound emotional and psychological impacts that often accompany rare and chronic conditions. We discuss the often-arduous "diagnostic odyssey" and how it, along with the daily realities of illness, can lead to feelings of sadness, anxiety, and a deep sense of grief for the life that was. 💔 We’ll talk about why simply being told to "just be positive" can actually be harmful, and how validating your true feelings is a powerful step towards healing. We'll also address the common feelings of isolation and the "fear of being a burden.” We'll cover being kinder to yourself, getting outside, and discovering what matters beyond your diagnosis. 💪 We'll also share how to find mental health support, therapy, support groups, or just people who understand – and why treating your whole self, not just symptoms, matters. Our goal is to help you feel seen, heard, and empowered on your unique journey. Remember, you are not alone, and your mental well-being is just as important as your physical health. ❤️ Don't forget to subscribe to March Forward for more insights. Like this episode, and share your thoughts or questions in the comments below – we're all in this together. Research & Resources: The Psychological Strain of Chronic Physical Illness. News-Medical.net: https://www.news-medical.net/health/The-Psychological-Strain-of-Chronic-Physical-Illness.aspxThe Complex Relationship Between Chronic Diseases and Mental Health. Open Access Journals: https://www.openaccessjournals.com/articles/the-complex-relationship-between-chronic-diseases-and-mental-health.pdfCoping with Chronic Illnesses. ResearchGate: https://www.researchgate.net/publication/353287468_Coping_with_Chronic_IllnessesResilience in chronic diseases: A systematic review. ResearchGate: https://www.researchgate.net/publication/275025127_Resilience_in_chronic_diseases_A_systematic_review #MentalHealth #RareDisease #ChronicIllness #PatientCommunity #EmotionalWellness #InvisibleIllness #GriefAndLoss #TraumaInformedCare #SelfCompassion #SupportGroups #MarchForward #MarchCommunity #HealthPodcast #PatientEmpowerment #YouAreNotAlone #MindBodyConnection March Forward - Podcast by March.ai

    16분

  8. 2025. 11. 17.

    How SHEPHERD AI Can Help with Quicker Rare Disease Diagnoses

    Send us a text The search for a rare disease diagnosis can be a long and lonely journey. But what if advanced technology could help light the way? 🔍 In this episode of March Forward, we're exploring SHEPHERD, an innovative AI approach bringing new hope to rare disease diagnosis. SHEPHERD uses a clever "few-shot learning" method, allowing it to learn effectively even from limited patient information. It also uses a deep rare disease knowledge graph, acting like a vast, interconnected map to find important connections for your unique health picture. 🧠 This isn't just theory. SHEPHERD has been tested on real-world cases from the Undiagnosed Diseases Network, successfully identifying causal genes in 40% of patients across many challenging areas. 🧬 It works with clinicians, providing vital insights to shorten the diagnostic odyssey. ✨ Learn More About SHEPHERD's Research: SHEPHERD's Published Research (npj Digital Medicine): https://www.nature.com/articles/s41746-025-01749-1 Zitnik Lab SHEPHERD Project Page: https://zitniklab.hms.harvard.edu/projects/SHEPHERD/SHEPHERD Preprint (medRxiv): https://www.medrxiv.org/content/10.1101/2022.12.07.22283238v2PubMed Central Article: https://pmc.ncbi.nlm.nih.gov/articles/PMC12222559/Subscribe to March Forward, for more deep dives. Like this episode, and share your thoughts below; we’re here to listen. #RareDisease #SHEPHERD #AIHealthcare #DiagnosticOdyssey #RareDiseaseAwareness #GeneticDiagnosis #RareDiseaseResearch  March Forward - Podcast by March.ai

    24분
모두 보기(15개)

소개

Welcome to the March Forward podcast, a space dedicated to the rare disease community. We understand the unique challenges you face, from the 'diagnostic odyssey' to navigating complex treatments and the emotional toll of caregiving. Our podcast aims to provide clear, trustworthy, and in-depth information, fostering hope and support as we explore the latest advancements in rare disease research and care.

정보

  • 제작진
    March.ai
  • 방송 연도
    2025년 - 2026년
  • 에피소드
    15
  • 등급
    전체 연령 사용가
  • 저작권
    © 2026 © 2025 March
  • 웹사이트 보기
    March Forward