• AI + Inflammation: what it means
    Jul 8 2025

    Is inflammation the hidden key in your rare disease journey? 🤔

    For millions living with these complex conditions, understanding the body's fiery response is absolutely crucial to managing progression and finding relief. 🔥

    In this episode of March Forward, we dive deep into how inflammation impacts rare diseases, exploring its fundamental nature from unseen triggers to its potential for profound, long-term effects on your well-being.


    We'll unpack the intricate pathways of inflammation, including the vital roles of cytokines and how their dysregulation can create a destructive, self-perpetuating cycle of tissue damage. 🌀

    Discover key biomarkers used to measure inflammation, their current diagnostic limitations in rare conditions, and exciting advancements in monitoring technologies. 🔬

    Plus, we'll address the pervasive and debilitating symptoms like pain and fatigue, explaining their physiological roots in chronic inflammation.


    Tune in to gain a comprehensive understanding of inflammation's pervasive impact and how a personalized, collaborative care plan is essential for rare diseases. 🤝


    Don't forget to subscribe to March Forward for more insights from our community run by patients, for patients. Like this episode, and share your thoughts or questions in the comments below – we're all in this together.


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    We know that navigating a health challenge can sometimes feel isolating. That’s why we created March a place for patients, families, and caregivers to connect with others who truly get it.


    March is built on a simple but powerful idea: you are not alone.


    Here, you can share your story, find trustworthy information, and offer and receive support without judgment. Our goal is to help you take those steady, forward steps on your journey, together with a community that understands and cares.


    Our podcast, March Forward breaks down complex research, highlights promising therapies, and keeps you informed about the latest rare disease breakthroughs. Because hope starts with staying informed.


    We invite you to listen, learn, and be a part of our growing family. To stay connected with our community and get the latest updates, please join the conversation with us across our platforms.


    Follow us and find your community:


    YouTube: https://youtube.com/@march.community?si=0t79oUkTJErtlENM

    Instagram: https://www.instagram.com/march.circle?igsh=MWIzdmV5b3g0azM1ZQ==

    LinkedIn: https://www.linkedin.com/company/march-community/


    Thank you for being here. Together, we can find a better way.

    Hosted on Acast. See acast.com/privacy for more information.

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    21 mins
  • Magic cure for WHIM syndrome?
    Jun 28 2025

    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, the first-ever targeted oral therapy designed to "unlock the barracks" and release these trapped immune cells.

    Learn how this innovative pill directly targets the root cause of the disease, moving beyond just managing symptoms ❤️. We'll break down the complex science 🔬 in an understandable way, discussing what the approval of this new treatment means for patients, families, and the future of rare disease therapy. We cover the diagnشostic journey, the challenges of living with a primary immunodeficiency, and the hope that comes with targeted treatments.

    Join us to understand the journey from genetic discovery to a life-changing pill. If you're passionate about advancements in rare disease or looking for stories of hope and scientific progress, this episode is a must-listen! 💪

    Don't forget to subscribe to March Forward for more insights from our community run by patients, for patients. Like this episode, and share your thoughts or questions in the comments below – we're all in this together.

    #WHIMSyndrome #Mavorixafor #XOLREMDI #RareDisease #PrimaryImmunodeficiency #Immunology #PatientCommunity #MedicalAdvancements #FutureOfMedicine #Biotechnology #ScienceExplained #Hope #MarchForward #MarchCommunity #RareDiseaseAwareness #MedicalPodcast #HealthPodcast #PatientEmpowerment #CXCR4 #TargetedTherapy #OrphanDrug



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    34 mins
  • Breaking Free: New Hope for Hemophilia B
    Jun 21 2025

    What if the the cutting-edge science behind Beqvez, including its AAV vector and the high-activity FIX-Padua variant, relentless cycle of infusions for Hemophilia B could finally pause, allowing your own body to take the reins? 🩸➡️ what clinical trials revealed about its potential to reduce bleeding rates and reliance on prophylaxis ❤️, and the crucial patient eligibility criteria like💪

    In this episode of March Forward, we explore Fidanacogene Elaparvovec (brand name: Be neutralizing antibody screening. We’ll also delve into the often-unseen market challenges 🔬 that even clinically successful therapiesqvez), a gene therapy that offered significant promise for individuals with Hemophilia B. We delve into the innovative science designed can face, providing a balanced look at this important story.

    Join us as we discuss the impact of Fidanacogene Elaparvovec, its place in the evolving landscape of Hemophilia B treatments, and the lessons learned from its journey. If you're passionate about medical advancements for rare diseases or want to understand the intricate path new therapies take, this episode is for you! 💪

    Don't forget to subscribe to March Forward for more insights from our community run by patients, for patients. Like this episode, share your thoughts or questions in the comments below – we're all in this together.


    #HemophiliaB #Beqvez #FidanacogeneElaparvovec #GeneTherapy #FactorIX #RareDisease #ClinicalTrials #PatientCommunity #MedicalAdvancements #DrugDevelopment #HealthcareEconomics #MarchForward #FIXPadua #AAVGeneTherapy #RareDiseaseAwareness #MedicalPodcast

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    38 mins
  • Empowering Your Own Cells Against Cancer
    Jun 14 2025

    What happens when standard treatments for a rare cancer like synovial sarcoma fall short? Could 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 protein often found in synovial sarcoma), and then reinfuses them as a personalized fighting force.

    Learn how this highly specialized approach works, its potential impact on managing this rare cancer ❤️, and what it could mean for the future of personalized medicine in oncology. We'll break down this complex science 🔬 in an understandable way, always focusing on the patient perspective, the journey involved, and the careful considerations of such advanced therapies.

    Join us as we discuss Tecelra's role in the fight against synovial sarcoma. If you or a loved one are navigating this rare cancer, or you’re interested in the latest breakthroughs in immunotherapy and cell therapies, this episode is for you! 💪

    Don't forget to subscribe to March Forward for more insights from our community run by patients, for patients. Like this episode, share your thoughts or questions in the comments below, and visit our website at march.ai.

    #SynovialSarcoma #Tecelra #AfamitresgeneAutoleucel #CellTherapy #CARTcell #Immunotherapy #RareCancer #CancerTreatment #PatientSupport #MarchForward #PersonalizedMedicine #Hope #MAGEA4 #Sarcoma



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    26 mins
  • Can In-Body Gene Editing Help Cure Rare Genetic Diseases?
    Jun 10 2025

    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 this innovative approach differs from other gene editing techniques and what it could mean for the future of treating inherited disorders ❤️. We'll break down this complex science 🔬 in an understandable way, focusing on its potential, the journey of discovery, and the careful steps involved in bringing such advancements to those who need them most.

    Join us as we discuss the impact of In Vivo CRISPR Base Editing, the ongoing research, and the careful considerations for the rare disease community. If you're passionate about medical advancements or looking for information on emerging therapies that could one day change lives, this episode is a must-listen! 💪

    Don't forget to subscribe to March Forward for more insights from our community run by patients, for patients. Like this episode, and share your thoughts or questions in the comments below – we're all in this together.

    #CRISPR #BaseEditing #InVivoGeneEditing #GeneEditing #RareDisease #GeneticDisorders #PatientCommunity #MedicalAdvancements #FutureOfMedicine #Biotechnology #ScienceExplained #Hope #MarchForward #MarchCommunity #RareDiseaseAwareness #MedicalPodcast #HealthPodcast #PatientEmpowerment #GeneticResearch

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    33 mins