Heather’s inspiring true story of living with a disorder that touches every part of her life. The disease makes her…
A Little More Than Perfect – My Life With (and In Spite of) Osteogenesis Imperfecta
Book Categories: Genetic Conditions
Alphabet Kids: From Add To Zellweger Syndrome: A Guide To Developmental, Neurobiological and Psychological Disorders for Parents and Professionals
From ASD (Autism Spectrum Disorder) to ZS (Zellweger Syndrome), there seems to be an alphabet disorder for almost every behavior,…
An Educator’s Guide to PKU
This guide is for teachers to help support children with PKU at school. Developed in the Divisions of Metabolism and Genetics…
An Educator’s /Parent’s Guide: Meeting the Needs of the Ehlers-Danlos Child
Created by the Ehlers-Danlos National Foundation, this guide gives an overview of Ehlers-Danlos, what medical situations may be encountered in…
An Educator’s Guide to Urea Cycle Disorders
This guide is for teachers and school nurses working with students who have urea cycle disorders (UCDs). It includes background…
An Ordinary Day: Kids with Rare Genetic Conditions
The every day moments captured in An Ordinary Day inspire awareness and empathy, while highlighting the commonalities between families with…
Angel Lady
Mother and daughter co-authored this book to give a positive family view of Angelmans Syndrome. Light and enjoyable reading for…
Angelman Syndrome: Communication, Educational, and Related Considerations
Individuals with Angelman Syndrome (AS) present many unique challenges to professionals, parents and others who are committed to maximizing individuals’…
As a Butterfly: Turner Syndrome Survival Guide
This book is by a girl with Turner syndrome, about this relatively common but little understood genetic disorder and her…
Becoming Mrs. Rogers
Becoming Mrs. Rogers is the true and heart-felt story of one couple’s journey into acceptance following a devastating genetic diagnosis…
Ben’s Big Decision
Ben’s Big Decision describes many of the features and characteristics of a child with Williams Syndrome through the story of…
Cardio What? (¿Cardio Què?)
This child-friendly guide helps children understand their own and/or their family member’s diagnosis of cardiomyopathy. It addresses information about inherited…
Care of the Infant and child with Trisomy 18 or Trisomy 13
Care of the Infant and child with Trisomy 18 or Trisomy 13 This e-book welcomes the reader in learning about…
Carlos
A colorful, cheerful children’s book about a boy named Carlos, a bilingual, happy child that has a rare, painful skin…
Chromosome Kids Like Me
This charming book is the perfect way to teach children (and adults!) about rare chromosome abnormalities and what makes the…
Dandy Kids
Families share their life experiences about children diagnosed with Dandy Walker Syndrome. The movie depicts the experts, advocates, and the…
Dear Megan: Letters On Life, Love And Fragile X
Mary Beth Busby and Megan Massey have something in common–they are both mothers of two sons with Fragile X syndrome….
Diagnosis: Rare Disease
This book follows the journey of 13 families who have one or more children with a rare disease called Mucolipidosis,…
Dinah’s Story: The Struggles And Triumphs Of Parenting A Child With Prader-Willi
Written by a parent, sharing the story of their journey with a daughter with Prader-Willi Syndrome. (as of the date…
Educating Children With Velo-Cardio-Facial Syndrome
Part one is a very thorough overview of the syndrome from both a medical and educational perspective. Part two focuses…
Every Least Sparrow
Jennifer’s mother, a journalist writing about life in their small Midwestern town, embarks on a quest with her daughter, diagnosed…
Fragile X Fragile Hope: Finding Joy In Parenting A Child With Special Needs
Wiritten by a mom whose son has Autism and Fragile X, this story chronicles her own journey through grief and…
Fragile X Fred
Look around you. Every person you meet has been molded by an intertwining of genetic information and personal experience. Fragile…
Fragile X- A-Z A Guide for Families by Families
This guide is intended to help families cope with the daily challenges of living with a child who has a…