“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