Rare Mamas

A manual for mothers of children with rare diseases, informed by firsthand experience and fueled by love

When your child is diagnosed with a rare disease, the world shifts beneath your feet. Answers are scarce. The path is unclear. And you feel impossibly alone. You are not alone. Millions of mothers share your journey, but until now, there's never been a resource crafted just for you.

Rare Mamas is your lifeline, a heartfelt, practical, and empowering guidebook specifically created for mothers of children with rare diseases-mothers like you, who carry a fierce love through the unknown.

With more than a decade of lived experience, Nikki McIntosh, founder of the Rare Mamas® community and mother to a child with a rare disease, wraps her arms around every rare mom who sat in a doctor's office, heard life-altering news, and stared down a road they never expected to walk. With raw honesty, hard-won wisdom, and sisterly compassion, she offers the book she desperately needed when her own son was delivered an earthshaking, rare diagnosis at eighteen months old. 

This book is part companion, part tactical guide, and part power source. Inside, you'll discover how to:

• Harness the power of love and transform it into meaningful action

• Cultivate courage and resilience-for you and your family

• Navigate complex medical, educational, and financial systems 

• Advocate effectively for your child

• Find healing, humor, and hope 

• Connect to a sisterhood that understands

• Take care of mama (that's you!)

When love calls, a mother answers. Whether you're newly diagnosed or battle-worn, Rare Mamas will ignite your inner fighter, equip you with hope and strength, and empower you to rise to the call of rare parenting. 

Because rare disease doesn't come with a manual. It comes with a mother who never gives up.