The Rare Mamas Book Is Here!
September 23rd, 2025 is a milestone I will never forget. My book, Rare Mamas: Empowering Strategies for Navigating Your Child’s Rare Disease, is officially out in the world, available everywhere books are sold. This is the resource I desperately wished I had when my son was first diagnosed with a rare disease. And now, I get to place it in your hands as a manual to support you, a map to guide you, a welcome mat to invite you into the sisterhood of millions of mothers navigating a rare disease, and a match to ignite your inner fighter and empower you for the journey ahead.
For all my fellow rare mamas in the battlefield, fighting for:
- Your child’s health
- Your family’s future
- Your joy and well-being
I hope this book can be your battle plan. I’m offering the mindset, the moves, and the moxie to help you rise strong in the rare fight. My hope is that it strengthens your inner fighter, equips you with strategies, and enables you to head into the fight empowered.
Why This Book Matters for Rare Moms and Rare Caregivers
Parenting a child with a rare or complex condition often feels like stepping into uncharted territory. The medical language is overwhelming. The school system doesn’t always understand. The emotional and physical demands can feel endless. And yet — hope, strength, and community are always possible.
That’s why I wrote this rare disease parenting book. Inside, you’ll learn how to:
- Adopt the right mindset for the journey ahead
- Advocate with confidence and diplomacy
- Navigate complex medical and educational 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
A Rare Disease Parenting Guide You Can Trust
There are many parenting books, but very few speak directly to the reality of raising a child with a rare disease. Rare Mamas fills that gap. It’s more than a book — it’s a rare disease parenting guide filled with compassion, hard-won insights, and practical tools that make daily life a little more manageable.
What makes it unique is that it’s not written from the outside looking in — it’s written from inside the life of a rare mom who understands the weight, the wonder, the weariness, and the warrior spirit this journey demands.
What Readers are Saying
Whether you are a parent to a newly diagnosed child just beginning this journey or a seasoned caregiver looking for renewed strength, this book was created to meet you where you are. I have been receiving reviews and photos from readers who have been taking the book with them on their journeys. From hospital bedsides to beaches, I feel so honored that this book can come alongside you during the heights of stress or when you’re trying to decompress.
How You Can Join the Rare Mamas Movement
- Order your copy today. Rare Mamas is now available at Amazon, Apple Books, Barnes & Noble, Bookshop.org, Books-A-Million, Porchlight, Target, various indie retailers, and more.
- Listen and connect. I recorded a special episode of my Rare Mamas Rising podcast where I read the introduction chapter aloud — straight from the heart. You can listen here to Episode 52.
- Share the book with others. If you know a parent, caregiver, or medical provider who supports rare disease families, please pass this resource along. Your share may be the connection that helps another mom feel less alone.
For Searchers and Seekers
If you landed here because you were searching for resources for rare moms, rare disease parenting strategies, or support for parents of children with rare diseases, welcome. This book was created for you. It’s filled with encouragement, empowerment, and practical help that you can begin using immediately in your everyday life.
Gratitude and Community
This book is not just mine — it belongs to every mom, every caregiver, and every family walking the path of rare disease. Your strength, your stories, and your resilience inspired every page. My hope is that this book helps you feel seen, supported, and empowered to rise to the call of rare parenting.
This book has been a dream years and years in the making. Seeing it in the hands of my fellow rare mamas is a joy. From my heart to yours — thank you for celebrating this milestone with me. I pray this book serves and blesses you.
The book is here. The movement is growing. And we are truly in this together!
In it together,
To listen to the podcast episode about the book, check out Rare Mamas Rising Episode 52
