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

Update: 2025-07-23

Description

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