Rare Mamas Rising: A Rare Disease Mom Podcast

Nikki McIntosh
  • 5.0 (29)
  • PARENTING
  • UPDATED MONTHLY

Rare Mamas Rising is a podcast for mothers of children with rare diseases to find strategies, strength, support, and sisterhood! Hosted by Nikki McIntosh, founder of Rare Mamas, author of the book Rare Mamas: Empowering Strategies for Navigating Your Child's Rare Disease, and a rare mom herself, each episode offers heartfelt reflections, practical tools, and empowering strategies to help you rise to the call of rare disease parenting. Catch an episode of Rare Mamas Rising and walk away encouraged, uplifted, and empowered. We rise stronger when we rise together—let's rise!

  1. 12/08/2025

    Hoping Through the Holidays

    RARE MAMAS RISING- EPISODE 54 Hoping Through the Holidays   Christmas is the season of hope. But hope can be complicated for rare disease parents navigating exhaustion, medical uncertainty, chronic stress, and the ache of unanswered prayers. In this episode of Rare Mamas Rising, we explore what hope really looks like for rare disease parents and caregivers during a season that can feel both beautiful and painfully complicated. This episode gently unpacks the realities of hoping in the hard: hope in the waiting, hope after disappointment, hope when you're exhausted, and hope when you're scared to try again. It offers reflections on why hope is an action we choose, how it keeps us moving in the world of medical parenting, and the surprising ways hope can transform us even before our circumstances change. For every rare caregiver navigating uncertainty or heaviness this time of year, this conversation creates space to reconnect with hope.   Links & Resources Mentioned: For more thoughts on Hope, check out Nikki's new book, Rare Mamas: Empowering Strategies for Navigating Your Child's Rare Disease. Order the book today at the links below: Amazon Apple Books Barnes & Noble Bookshop.org Books-A-Million IndieBound Indigo Kobo Porchlight Book Info: www.raremamas.com/book   CONNECT WITH NIKKI   Facebook https://www.facebook.com/RareMamas1/ Instagram https://www.instagram.com/Rare_Mamas/ Website https://raremamas.com/ Email info@raremamas.com

    18 min

  2. 10/29/2025

    Rhythms of Rising and Recovering

    RARE MAMAS RISING- EPISODE 53 Rhythms of Rising and Recovering As rare mamas, we're no strangers to effort. We plan, advocate, and persevere through every season. The calm seasons are fleeting, the storms arrive unannounced, and balance often feels impossible. So maybe it's time to stop waiting for life to slow down, and instead, learn to build recovery into the cracks and spaces of our real lives. In this episode, Nikki explores what it means to rest between the rising, to create a rhythm of recovery within the chaos, to stop pushing through every warning sign from our bodies, and to begin listening to what we truly need. Because maybe the goal was never perfect balance. Maybe it's learning to breathe in the middle of the unbalanced—to stop waiting for life to change, and instead, change how we move through it.   Links & Resources Mentioned: Order the Rare Mamas book today at the links below: Amazon Apple Books Barnes & Noble Bookshop.org Books-A-Million IndieBound Indigo Kobo Porchlight   Book Info: www.raremamas.com/book   CONNECT WITH NIKKI   Facebook https://www.facebook.com/RareMamas1/ Instagram https://www.instagram.com/Rare_Mamas/ Website https://raremamas.com/ Email info@raremamas.com   PODCAST INFO podcast@raremamas.com

    20 min
  3. Rare Mamas Book Release Day + A Special Reading from the Introduction

    09/23/2025

    Rare Mamas Book Release Day + A Special Reading from the Introduction

    RARE MAMAS RISING- EPISODE 52 Rare Mamas Book Release + A Special Reading from the Introduction Today is the day! Nikki's new book, Rare Mamas: Empowering Strategies for Navigating Your Child's Rare Disease, is officially here. In this very special episode, Nikki celebrates release day by sharing the heartfelt introduction, giving you a first look at the hope, strength, and sisterhood at the heart of Rare Mamas. This book is a lifeline for rare moms, rare disease parents, and caregivers who are navigating the overwhelming and often isolating rare disease journey—whether you're just receiving a diagnosis or years into the caregiving trenches. If you've ever felt unseen, overwhelmed, or unsure of the path ahead, Nikki's hope is that this book and today's episode provide you with the strategies, strength, support, and sisterhood to rise to the call of rare parenting.  Order the book today at the links below: Amazon Apple Books Barnes & Noble Bookshop.org Books-A-Million IndieBound Indigo Kobo Porchlight Book Info: www.raremamas.com/book Nikki's taken her lived experiences and hard-won wisdom from over a decade and poured them into a compassionate and actionable guide to help mothers navigate the complexities of rare disease parenting while finding strength, hope, and community. Inside the book, you'll learn how to: Adopt the right mindset for the journey ahead Advocate with confidence and diplomacy Navigate complex medical, educational, and financial systems Discover practical strategies for daily challenges Feel capable and empowered to make decisions Build a circle of support you can count on Balance caregiving with your own well-being Find strength in sisterhood and shared wisdom Hold onto hope while facing the unknown Rise to the call of rare parenting   CONNECT WITH NIKKI   Facebook https://www.facebook.com/RareMamas1/ Instagram https://www.instagram.com/Rare_Mamas/ Website https://raremamas.com/ Email info@raremamas.com     PODCAST INFO podcast@raremamas.com

    19 min

  4. 08/25/2025

    The Making of Rare Mamas: Reflections on Writing and Rare Parenting

    RARE MAMAS RISING- EPISODE 51 The Making of Rare Mamas: Reflections on Writing and Rare Parenting In this episode of Rare Mamas Rising, host Nikki takes listeners behind the pages of her upcoming book, Rare Mamas, to share how the writing journey mirrored the rare parenting journey in powerful and unexpected ways. Through honest storytelling, she unpacks the highs, the lows, and the lessons that connect directly to life as a rare mama. She covers: ·       The hardest and easiest chapters to write — from reliving the grief of "D-Day" to finding hope in Rising to the Call, the chapter that inspired the name of this podcast. ·       The easiest and hardest parts of the process — how writing drew on Nikki's creativity, career, and even her improv training, while publishing tested her patience and reminded her of the difficulties of rare parenting. ·       Unexpected lessons in calling and community — the reminder that doing good doesn't mean it's easy, the importance of going back to your "why," and the gift of community and sisterhood that makes the journey possible. Nikki's hope is that listeners hear their own stories reflected in these lessons, and that when you read this book, you feel that same sisterhood woven through every page, and the solidarity of a community that is rising together.   Links & Resources Mentioned: Join the Book Interest List: www.raremamas.com/book   CONNECT WITH NIKKI   Facebook https://www.facebook.com/RareMamas1/ Instagram https://www.instagram.com/Rare_Mamas/ Website https://raremamas.com/ Email info@raremamas.com   PODCAST INFO podcast@raremamas.com

    20 min

  5. 07/23/2025

    Introducing Rare Mamas: A Rare Disease Parenting Book by Nikki McIntosh

    RARE MAMAS RISING- EPISODE 50 Introducing Rare Mamas: A Rare Disease Parenting Book by Nikki McIntosh Nikki McIntosh—rare disease mom, advocate, caregiver, and founder of Rare Mamas—shares her biggest news yet: the upcoming release of her debut book, Rare Mamas: Empowering Strategies for Navigating Your Child's Rare Disease, launching September 23rd. This heartfelt and practical rare disease parenting book is written for mothers of children with rare diseases who are navigating the overwhelming world of rare diagnoses, caregiving responsibilities, and medical advocacy. Tune in to hear the emotional story behind the book, what's inside, and how you can be part of this powerful movement of support, strength, and sisterhood for rare disease moms. In this episode, Nikki shares: Why she wrote Rare Mamas, a first-of-its-kind resource for moms raising children with rare diseases What's inside the book (28 chapters packed with caregiver tools, advocacy strategies, emotional support, and stories from lived experience) How she kept writing through surgeries, hospital stays, exhaustion, and uncertainty What this guide offers for parents of medically complex children—including guidance on healthcare, education, systems, and self-care How to join the Rare Mamas Book Interest List and help share this support resource with the broader rare disease community Links & Resources Mentioned: Join the Book Interest List: www.raremamas.com/book Follow on Instagram: @rare_mamas Become a Rare Mamas Ambassador – DM @rare_mamas or email nikki@raremamas.com to get involved   CONNECT WITH NIKKI   Facebook https://www.facebook.com/RareMamas1/ Instagram https://www.instagram.com/Rare_Mamas/ Website https://raremamas.com/ Email info@raremamas.com   PODCAST INFO podcast@raremamas.com

    11 min

  6. 05/08/2025

    Holding On To Our Identity

    RARE MAMAS RISING- EPISODE 49 Holding On To Our Identity with Rare Mama Nikki McIntosh In this empowering Mother's Day episode of Rare Mamas Rising, host Nikki invites listeners into a raw, tender conversation about what it means to hold on to your identity while parenting a child with a rare disease. From personal reflections to stories from fellow rare moms, this episode explores the invisible shifts in identity and small but powerful ways to reconnect with who you are. Because this Mother's Day, we're celebrating the whole you— not just the caregiver, but the creative, the dreamer, the friend, the person. This episode is a tribute to the woman behind the diagnosis — a celebration of who you are, who you were, and who you're becoming.     CONNECT WITH NIKKI   Facebook https://www.facebook.com/RareMamas1/ Instagram https://www.instagram.com/Rare_Mamas/ Website https://raremamas.com/ Email info@raremamas.com     PODCAST INFO podcast@raremamas.com

    17 min

  7. 04/10/2025

    Spring Cleaning - Letting Go of Things that No Longer Serve Us

    RARE MAMAS RISING- EPISODE 48 Spring Cleaning: Letting Go of Things That No Longer Serve Us with Rare Mama Nikki McIntosh   In this uplifting episode of Rare Mamas Rising, Nikki invites you to embrace spring's renewal by letting go of what no longer serves you—draining digital habits, old stress loops, unhelpful routines, and even relationships or thoughts that weigh you down. With personal insights and actionable steps, she guides Rare Mamas through clearing the clutter—mental, emotional, and physical—to make space for peace and strength. Tune in to discover how shedding these burdens can lighten your load and lift you up, because as spring blooms, so can we.       CONNECT WITH NIKKI   Facebook https://www.facebook.com/RareMamas1/ Instagram https://www.instagram.com/Rare_Mamas/ Website https://raremamas.com/ Email info@raremamas.com   PODCAST INFO podcast@raremamas.com

    16 min

  8. 03/20/2025

    EP 47 - Tackling Therapy Burnout

    RARE MAMAS RISING- EPISODE 47 Tackling Therapy Burnout with Rare Mama Nikki McIntosh   In this episode, Nikki dives into the all-too-real challenge of therapy burnout—when the endless cycle of PT, OT, and more leaves both Rare Mamas and their kids feeling overwhelmed. Explore how to spot the signs of burnout, practical ways to lighten the load with help from therapists, and when to hit pause for a much-needed reset. It's all about staying attuned to our kids' and our own emotional well-being, empowering us to find strength even in the toughest moments.     CONNECT WITH NIKKI   Facebook https://www.facebook.com/RareMamas1/ Instagram https://www.instagram.com/Rare_Mamas/ Website https://raremamas.com/ Email info@raremamas.com   PODCAST INFO podcast@raremamas.com

    12 min
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About

Rare Mamas Rising is a podcast for mothers of children with rare diseases to find strategies, strength, support, and sisterhood! Hosted by Nikki McIntosh, founder of Rare Mamas, author of the book Rare Mamas: Empowering Strategies for Navigating Your Child's Rare Disease, and a rare mom herself, each episode offers heartfelt reflections, practical tools, and empowering strategies to help you rise to the call of rare disease parenting. Catch an episode of Rare Mamas Rising and walk away encouraged, uplifted, and empowered. We rise stronger when we rise together—let's rise!

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