GET YOUR COPY TODAY!
Effie is back!
Did you know there are over 7,000 known rare diseases? Follow our narrator, Effie, as she uses the alphabet to explain 26 rare diseases in a scientifically accurate, but easy to understand, way.
Featured rare diseases include: Aicardi Syndrome, Baraitser Winter Syndrome, CDKL5 Deficiency Disorder, Desanto-Shinawi Syndrome, Ectodermal Dysplasia, FOXG1 Syndrome, Glycogen storage disease, Hemimegalencephaly, Infantile Bullous Pemphigoid, Joubert Syndrome, Kabuki Syndrome, Leukodystrophy/Leuden Syndrome, Moebius Syndrome, Non-ketotic hyperglycinemia, Osteogenesis Imperfecta, Prader Willi Syndrome, 22Q13- Phelan McDermid Syndrome, Russell Silver Syndrome, Sanfilippo Syndrome, Tuberous Sclerosis Complex, undiagnosed, Vein of Galen Malformation, Wolf Hirschhorn Syndrome, Xia-Gibbs Syndrome, PYROXD-1, and Zimmerman Laband syndrome.
We love this book, it is full of a lot of information but explained in a way young kids and adults alike can understand. Our youngest has TSC and we are so pleased to see it featured here. Awareness means everything to the rare diseases families as it leads to inclusion, acceptance and better research and accomodations!
Molly Urban