Jack, Pyridoxine-Dependent Epilepsy Jack was born seemingly healthy but fighting an invisible battle inside his little body. On Jack’s second day home from the hospital and fourth day of life, he started to become agitated in an abnormal and inconsolable
New Research Provides Insight Into How Propionic Acidemia Changes Liver Metabolism Guo-Fang Zhang, PhD, Duke University Propionic acidemia (PA) is caused by deficiency of an enzyme called propionyl-CoA carboxylase (PCC), which is needed to break down propionyl-CoA. When PCC does
Barriers to Accessing Medical Foods and Formula Research Study Powered By EmbedPress If you’re a caregiver for a child with an Inborn Error of Protein Metabolism, I would love to hear from you! My name is Kara, and I’m a graduate
Every Meal Is a Science Experiment: Raising Zara with Isovaleric Acidemia At the center of every calculation is not a medical condition. It is Zara. Curtis, father to Zara When people first meet our daughter Zara, they do not see
OAA is hosting a virtual town hall on May 31, 2026 at 6pm Central Time. Come to here about updates on our programming, exciting things to look forward to, and give feedback on what is important to you. Bring any
OAA community members take on the NORD research summit Several members of the OAA community attended this year’s NORD summit in Washington, DC Oct 19-21. Irfan Patel and his son Yusuf helped recruit volunteers for the RareAction Network, a NORD-led
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