Rare ParentingJul 94 min readCaregiversDoes Your Child Need Genetic Testing?While you might think your child is only at risk of a genetic disease if a certain condition runs in the family...
Rare ParentingJan 195 min readCaregiversUndiagnosed Children: What to Do NextParents of children with rare diseases may spend years tracking down effective treatments as they manage symptoms...
Brien GearinNov 43 min readSmiles for CeciWhile Rett has changed her life and our life as a family, it hasn’t changed the wonderful little girl Ceci is and always would be with or wi