‘It Will Consume Your Life’: 4 Families Take On Rare Diseases. Rare and Orphan Diseases, Genetics and Heredity, Research, Rett's Syndrome, Drugs (Pharmaceuticals), Children and Childhood, Clinical Trials, Parenting, Gerstmann-Straussler-Scheinker Syndrome, Jansen's Metaphyseal Chondrodysplasia (JMC)