Each chapter has a specific focus, written by a different expert in the field. After an overview of OI, covers…
Growing Up With OI – A Guide for Families and Caregivers
Book Categories: Genetic Conditions
Handbook of Neurodevelopmental and Genetic Disorders in Children – 2nd Edition
This book addresses a broad range of biologically based disorders that affect children’s learning and development. Leading authorities review the…
Hope And Destiny: The Patient And Parent’s Guide To Sickle Cell Disease And Sickle Cell Trait
Provides clear-cut and in-depth information on living with the illness. It offers the latest information on preventing complications, research, and…
In The Company of Angels – A Compilation of Stories and Poems on Angleman Syndrome, By Those Who Know It Best
Pam shares her story, and the stories of other parents, of raising a child with Angelman Syndrome. Focuses on the…
It’s A Small World After All – Stories by Those Affected by Turner Syndrome
A collection of many inspirational life stories from girls, women, and their families, affected by Turner Syndrome.
Jason’s First Day!
Jason, who has Osteogenesis Imperfecta , goes to school for his first day. Jason’s story provides basic information about OI….
Joe Learns About Fabry Disease
Joe’s story was developed to help explain Fabry disease and its treatment from the perspective of a ten year old….
Keeping Katherine: A Mother’s Journey To Acceptance
Susan Zimmermann tells the story of her life with her daughter Katherine, who has Rett Syndrome, a neurological disorder. Writing…
Living Well With Mitochondrial Disease – A Handbook for Patients, Parents and Families
This book helps make sense of mitochondrial disease (Mito), an overwhelming and complex group of diagnoses that has grown exponentially…
Michael And Marie: Children With Prader-Willi Syndrome
A story of two children with Prader-Willi Syndrome (Michael, 10, and Marie, 6) moving through the school day. While talking about…
Missing Genetic Pieces: Strategies For Living With VCFS: The Chromosome 22q11 Deletion
Sherry Baker-Gomez is the parent of a child with VCFS. Her son, now 25, was finally diagnosed with VCFS at…
My Brother, MPS and Me
Sometimes the best way to learn about a tough topic is to talk to your brother or sister. Join Greg…
My Life Beyond Neurofibromatosis: A Mayo Clinic Patient Story
Leo, a boy with neurofibromatosis, is visiting New York with his family after some treatment. But everywhere they go, mysterious…
Neurogenetic Syndromes: Behavioral Issues and Their Treatment
An essential pediatrics textbook and professional reference, this cutting-edge volume sheds new light on neurogenetic syndromes using a promising clinical…
Our Altered Life. A Mother’s Heartbreak and the Boys Who Saved Her
After a healthy twin pregnancy, Charlene and Mark were shocked to be told that one of their boys had been…
Parenting a Child with Life-Limiting Illness (DVD)
This film was produced by National Tay-Sachs & Allied Diseases Association (NTSAD) to lessen the feelings of isolation that newly…
Penny The Penguin Has PKU
A charming story for children, highlighting that while Penny has to eat different foods because she has PKU. Her friends…
Sotos Syndrome A Handbook For Families
While the birth of a child with Sotos syndrome is often marked by a sense of apprehension and uncertainty, parents…
Special
This is the heartwarming life story about CiCi who was born with Microcephaly, a genetic defect that causes the cranium…
Spelling Love With An X: A Mother, A Son, and The Gene That Binds Them
When her son, J.P., was first diagnosed with fragile X syndrome, Clare Dunsford discovered that she and three of her…
Super Pompe Powers
Sometimes you have to look a little harder to see someone’s super powers! Join Helen as she reveals her Super…
The Abilities in Me 22 q Deletion
This picture book is dedicated to children born with a condition called 22q deletion, also known as DiGeorge Syndrome. Explore…
The Boy In The Moon: A Father’s Journey To Understand His Extraordinary Son
Ian Brown’s son Walker is one of only about 300 people worldwide diagnosed with cardiofaciocutaneous (CFC) syndrome—an extremely rare genetic…
The Chicken Who Saved Us: The Remarkable Story of Andrew and Frightful
Eight-year-old Andrew is autistic and bilingual. He speaks English–and Chicken. With words limited by autism, Andrew lives in a fantastic…