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 practicalrare disease parenting bookis 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 wroteRare Mamas, a first-of-its-kind resource formoms 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 theRare Mamas Book Interest Listand help share this support resource with the broaderrare disease community
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