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PODCAST

March Forward

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.

health & fitness medicine

All Episodes

19:13

What Really Happens When You Join a Clinical Trial? 5...

March Forward ·

2026/01/05

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 ...

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14:30

Can Holistic Medicine Help Your Rare Disease? What...

March Forward ·

2025/12/22

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

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16:01

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

March Forward ·

2025/12/15

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

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17:25

Can Personalized Medicine Finally Help Rare Disease...

March Forward ·

2025/12/09

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

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15:50

The Warning Signs of Caregiver Burnout.

March Forward ·

2025/12/08

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 ...

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25:41

Can AI Accelerate Drug Repurposing for Rare Diseases?

March Forward ·

2025/12/01

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 sp...

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16:06

How Can We Cope with the Mental Toll of Rare and...

March Forward ·

2025/11/24

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

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24:07

How SHEPHERD AI Can Help with Quicker Rare Disease...

March Forward ·

2025/11/17

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

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21:46

C2S-Scale: Yale & Google's AI That Reads Cells. Will...

March Forward ·

2025/11/10

Send us a text A new collaboration between Yale and Google just released C2S-Scale, a 27-billion parameter foundation model that's learned to "read" cells by converting gene expression into text. It's already predicted a validated cancer therapy combination that worked in the lab. But here's the question that matters to our community: What can this tool actually do for rare diseases? 💡 In this episode of March Forward, we're not just celebrating the hype; we're asking the hard questions...

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19:47

What's inflammation got to do with your rare disease?

March Forward ·

2025/11/03

Send us a text Could inflammation be the missing piece in your rare disease puzzle? 🤔 If you're living with a rare condition, understanding your body's inflammatory response might be the key to better management and relief. 🔥 In this episode of March Forward, we break down how inflammation actually works in rare diseases, from what triggers it to why it can spiral out of control. We'll explore the signals your body sends (called cytokines) and how they can turn against you, creating cycles

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18:25

The First Therapy to Unlock Trapped Immune Cells in...

March Forward ·

2025/10/27

Send us a text Imagine your body's best defenders, your immune cells, are ready for duty but locked away, unable to fight. 🛡️ For individuals with the ultra-rare WHIM syndrome, this isn't just an idea; it's the biological reality they live with every day. In this episode of March Forward, we explore WHIM syndrome, a genetic condition where a faulty signal traps vital white blood cells in the bone marrow. But this is also a story of a major breakthrough ✨. We dive into the science behind...

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17:18

Fidanacogene Elaparvovec for Hemophilia B

March Forward ·

2025/10/20

Imagine your body's best defenders, your immune cells, are ready for duty but locked away, unable to fight. 🛡️ For individuals with the ultra-rare WHIM syndrome, this isn't just an idea; it's the biological reality they live with every day. In this episode of March Forward, we explore WHIM syndrome, a genetic condition where a faulty signal traps vital white blood cells in the bone marrow. But this is also a story of a major breakthrough ✨. We dive into the science behind Mavorixafor, t...

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21:04

Afamitresgene Autoleucel (Tecelra) for Synovial Sarcoma

March Forward ·

2025/10/13

What happens when standard treatments for a rare cancer like synovial sarcoma fall short? Could Empowering the answer lie in empowering your own immune system? 🛡️ In this episode of March Forward, we explore Afamitresgene Autoleucel (Tecelra), an innovative cell therapy offering a new avenue of hope for patients with advanced synovial sarcoma. This cutting-edge treatment takes a patient's own immune cells, 're-educates' them in a lab to specifically target cancer cells (targeting MAGE-A4, a

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21:02

Can In-Body Gene Editing Help Cure Rare Genetic...

March Forward ·

2025/10/05

What if we could gently fix the tiny genetic 'typos' that cause devastating rare diseases, right where they are in the body? 🧬In this episode of March Forward, we dive into In Vivo CRISPR Base Editing, a cutting-edge science offering a new horizon of hope ✨ for patients and families navigating rare genetic conditions. We explore how this groundbreaking technology aims to make ultra-precise changes to DNA inside the body, potentially correcting the root cause of certain diseases.Learn how

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27:46

Enzyme Replacement Therapy for Lysosomal Storage...

March Forward ·

2025/09/29

For families navigating Lysosomal Storage Diseases, the routine of Enzyme Replacement Therapy is a familiar path. But what if the future holds new and different options? In this episode of March Forward, we're exploring the cutting-edge science that could change how we treat these complex conditions. We're asking the big questions that many in our community think about: 🧠 Can we get treatments safely past the blood-brain barrier? 🤔 How do you weigh a proven, lifelong therapy against a

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15 results

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