As parents, we want to protect our children from harm and keep them safe. So when your child is suffering from a rare metabolic disorder, it’s natural to feel helpless. Finding resources and a network of experts to provide the latest information is essential. Fortunately, there’s help for parents of children with bile acid synthesis disorders (BASD).
BASD is a rare metabolic disorder that impacts the production of bile and hinders the liver’s ability to break down and process fats and vitamins. It can be treated with replacement therapy or a liver transplant. But the path to diagnosis and treatment can be difficult if you don’t have a community to support your family. Enter The Childhood Liver Disease Research Network (ChiLDReN).
ChiLDReN is a collaborative team of doctors, nurses, research coordinators, medical facilities and patient support organizations. With clinical sites and research labs in the U.S., Canada, and London, their goal is to improve the lives of children and families dealing with rare liver diseases. The Network was developed to support the discovery of new diagnostics, etiologic, and treatment options for kids with liver disease, and those who undergo liver transplantation. It also supports training for the next generation of investigators in rare, pediatric liver diseases.
One of the primary goals of the ChiLDReN is to provide a way for patients to collaborate with doctors and researchers by participating in research studies. At present, they are conducting a longitudinal study to evaluate the genetic causes of rare metabolic liver diseases and gain greater understanding into the possibility of effective treatments. The study began in 2007 and will conclude in 2019.