The Emory Genetic Clinical Trials Team is always seeking creative and informative ways to help families and patients understand different aspects of clinical trials and genetic conditions. We have compiled a brief list of fact sheets, books, and information here that have been useful to us and others.
Transitions Growing And Managing Your Own Healthcare: What Every Teen Living with an LSD Needs to Know to Manage Their Healthcare
Written by Dawn Laney, MS, Carol Ogg, BS and Nadia Ali, PhD
Target Audience Ages 10-21 years
About The teenage years are a time when teens often begin separating their thoughts, goals, and self-image from those of their parents. They begin exploring who they are and who they want to become as they enter adulthood. For people living with a chronic disease, like a lysosomal storage disease, the teen years should also include a gradual transfer of medical care responsibility from parents to the teens themselves. As you might guess, it’s a lot easier to learn to do this slowly and with a plan, rather than jumping headfirst into a fast and confusing crash course of medical needs on your 18th birthday. This workbook, Transitions: Managing Your Own Healthcare, is packed full of exercises designed to help teens figure out how much they already are managing their own healthcare and how to uncover what they still need to learn and master to successfully manage their own healthcare.
Just Like Me!: A Book about a Girl with a Rare Disease
Written by Anne Rugari
About
Just Like Me! was written to help all children understand that boys and girls with any rare disease are just like them. They may look or act different, but inside they are just kids, like them. Hopefully the book will help encourage understanding of all children who are differently-abled. Such an important life lesson!
Written by Dawn Laney, MS and Stephanie Cagle Illustrated by Michael J. Johnson
Target Audience Families with children diagnosed with MPS
About Sometimes the best way to learn about a tough topic is to talk to your brother (or sister). Join Greg as he tells us about the genetic conditions MPS (Mucopolysaccharidosis) and its impact on his brother.
About Rare Is Everywhere takes readers on a journey through the animal kingdom, revealing that grasshoppers can be pink, tigers can be white, and lobsters can be blue. It is not only a stunning picture book but also a valuable resource. All ages, and species, will enjoy this book.
Written by Abigail Carbone Illustrated by Jeff Pert
About The Long Road to Fabry is a fun and informative book written by Abigail Carbone, a teenager with a rare genetic disorder. It is simple yet provides a very accurate and much needed child’s perspective of Fabry’s disease, that will appeal to both young and old.
