INFORM’S NEW WEBSITE PROVIDES HELPFUL INFORMATION ON FATTY ACID OXIDATION DISORDERS (FAODs) FOR FAMILIES AND PROFESSIONALS
PITTSBURGH, PA – Parents worried about the diagnosis and treatment of children with fatty acid oxidation disorders (FAODs) now have a valuable resource: informnetwork.org, a new website by the International Network for Fatty Acid Oxidation Research and Management (INFORM).
“Our goal is to help families and professionals find the latest information on these rare inherited metabolic conditions,” said Jerry Vockley, M.D., Ph.D., scientific director of INFORM and professor of human genetics and the Cleveland Family Endowed Chair in Pediatric Research at the University of Pittsburgh.
Along with the latest developments in genetic research and clinical trials, INFORM’s new site includes an interactive forum, where family members can post questions about these disorders. For example, one parent asked; “Why Hypoglycemia is much more frequent in MCAD and VLCAD?”
“It is most common in the first few years of life and becomes less frequent in older children
or adolescents when muscle symptoms become more frequent.” said Vockley. You can read the complete question & answer here: https://informnetwork.org/question/hypoglycemia/
About 1 in 10,000 individuals are affected by fatty acid oxidation disorders, and about 400 affected babies are born with an FAOD each year, according to Vockley. These metabolic conditions can threaten the lives of infants, children and adults because they prevent the body from generating cellular energy from fats during times of stress, illness or fasting. That can result in mild symptoms, chronic medical problems or sudden death.
Founded in 2013, INFORM is the only global scientific organization that focuses on research, education and discussion into the cause, diagnosis, and management of disorders of fatty acid oxidation and the carnitine cycle.
“Our new website provides a central informational resource for researchers, clinicians and families to discuss the causes, diagnosis, and management of these serious genetic conditions,” said Keith W. McIntire, INFORM coordinator, University of Pittsburgh Medical Center Children’s Hospital of Pittsburgh. For more information, visit www.informnetwork.org.