Publisher's Synopsis
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. There is a need for educational material that can raise awareness about rare disorders such as Fabry disease. The real life diagnostic journey of Abigail outlined in this book will hopefully help other children with Fabry disease from feeling alone and isolated, and help their friends and others better understand the challenges that our patients have to go through. Amel Karaa, MD. Geneticist at Massachusetts General hospital. Lysosomal storage disorders Program. All profits will go to the Lysosomal Storage Disorders Program at Massachusetts General Hospital.
