“McIntosh transforms a wealth of information into an inspiring roadmap. As someone who has lived in a home with a child who has a rare disease, this book will leave readers reassured, hopeful, and equipped with strategies that make daily life more manageable, fulfilling, and grounded in care and connection. Very highly recommended.”

Asher Syed,  Readers’ Favorite

“This powerful book is a carefully curated guide to helping mothers understand life with a child who has received an existence-altering diagnosis. The author approaches this topic from a personal standpoint, providing real-life examples from their own experience of raising a child living with a severe, rare disease. The advice in this book blends research, personal testimony, experience, as well as faith-based insights. This book is a must-read not only for parents but also for family members and even the general public.”

Nicole Yurcaba,  The US Review of Books

“Rare Mamas is a valuable field guide for mothers facing the challenges of rare disease parenting. It blends being your new friend seamlessly with imparting tactical strategies for survival in a demanding and highly conplex role. From understanding medical jargon and navigating health and education systems to self-guide, Rare Mamas helps fill in the blanks giving you a head start on the journey ahead. A perfect read for any parent embarking on this journey which will help get you off on the right footing while saving countless hours of research and worry.”

Nicola Miller,  Editor-In-Chief, Rare Revolution

“Rare Mamas is more than a book; it’s a lifeline for parents navigating the uncharted territory of raising a child with a rare disease. Nikki McIntosh has taken her personal experience and transformed it into a powerful, practical guide filled with care, wisdom, and actionable strategies. Her voice is one of strength and hope, offering a much-needed sense of community for those who often feel alone in their journeys. This book is an essential resource, and I believe it will make a real difference for so many families.”

Montel Williams, TV host, podcast host, and author

“As a TV producer who tells the stories of rare families—and the mother of a child with a rare disease—I only wish this book had existed when we began our journey. Rare Mamas is the kind of honest, compassionate support every rare parent deserves.”

Carri Levy, co-creator and senior producer of the series Behind the Mystery: Rare and Genetic Disease

“Rare Mamas is the anchor and compass parents need after receiving a life-changing diagnosis for their child. There hasn’t been a roadmap to deal with such complexities . . . until now. It offers the vital guidance, unwavering support, and a deep understanding that will empower you to navigate the unique and challenging journey of rare. Rare Mamas isn’t just a book—it’s the lifeline you’ve been desperately searching for.”

Brittany Cocilova, supervising producer of the series Behind the Mystery: Rare and Genetic Disease

“As a rare disease patient, I’ve seen firsthand the relentless advocacy my mom had to shoulder. This book is the guide she deserved but never had.”

Ilana Jacqueline, rare disease patient and author of Medical Gaslighting and Surviving and Thriving with an Invisible Chronic Illness

“Nikki McIntosh wrote the book we’ve all needed with the power of retrospect as well as a pithy gaze at her family’s life now. She knows that rare parents enter this rare life at diagnosis but never leave, because our children can’t. Nikki reminds us that the energy of connection will give us endurance, and love will fuel our resilience when we forget to live for ourselves and give everything we can for our child. What I appreciate most about this book is the practical—giving us reminders, heads ups, and answers when we ask what now? In my own Rare Mama journey, I learned as I went alone. I wish I’d had this book earlier.”

Patti M Hall, author of Loving Large: A Mother’s Rare Disease Memoir

“Rare Mamas is the book I wish I’d had when my daughter got her diagnosis, when I was feeling overwhelmed, when I was scared, and when I felt isolated. Nikki shares so much wisdom in the voice of a trusted guide, who’s also a cheerleader and best friend. Knowing there are others traveling a similar path provides the dose of courage we all need when our worlds are turned upside down by a rare disease diagnosis. From practical strategies to emotional support, Rare Mamas is an indispensable manual to refer to when you need a compassionate guide who truly understands. This book doesn’t just offer solutions—it offers validation, inspiration, and the reassurance that even in the rarest of journeys, you are never alone.”

Jessica Fein, author of Break Taking: A Memoir of Family, Dreams, and Broken Genes and host of the podcast “I Don’t Know How You Do It”

“Rare Mamas is a heartfelt and practical guide that offers clarity, strength, and unwavering support for parents facing the overwhelming journey of rare disease. The author is incredibly well-spoken and relatable, drawing from lived experience and deep empathy to speak directly to the hearts of caregivers. With compassion and wisdom, she shares empowering strategies that help mothers feel less alone, more equipped, and grounded in their inner strength as they advocate for their children. This book is a must-read companion for any parent navigating this complex path.”

Carol Gelbard, LCSW, psychotherapist and former director of emotional wellness at the Neuromuscular Disease Foundation

“Rare Mamas are less rare than we would like them to be. Millions of rare families manage everyday life with a level of uncertainty that would scare most. But as Nikki tells us in her beautiful book, Rare Mamas are a special breed, a group that will never stop fighting. We can all learn so much by just watching them live; they are true warriors for health and happiness!”

Dr Katia Moritz, director of documentary Undiagnosed and parent to two rare young adults

“With raw honesty and emotional vulnerability, Nikki opens a door into the journey of being a rare mama and guides readers through complex emotions and challenges. She lights the path for other rare mamas with grace, wisdom, and a deep well of compassion. Her empowering, and practical advice provides guidance in navigating the often-overwhelming journey of rare disease care. Nikki writes from the trenches. Her voice is authentic and fierce, yet loving and compassionate. Rare Mamas is not just a book . . . it is a lifeline for rare mamas!”

Melissa Hioco, director of community engagement for STXBP1 Foundation, and Rare Mama to Alex