Celebrating 23 Years of OAA Calendars For the last 15 years, it has been an absolute honor and joy to volunteer as the designer for the digital OAA calendar, supporting our wonderful non-profit organization. Every year brings the creative challenge of
InforMMA Observational Study Sponsored by Genespire Genespire is sponsoring a study, InforMMA, to better understand methylmalonic acidaemia (MMA), a rare inherited metabolic disorder. The multi-centre observational study, InforMMA, is being conducted at specialized clinical sites in Italy, Spain, United Kingdom,
Why Does It Take So Long: A Field-guide to the Research Pipeline Families often ask us why a promising treatment they read about seems to take years — sometimes a decade or more — to reach patients. The honest answer
OAA Financial Summary 2025 Each year we report the financial status of the OAA, highlighting our accomplishments and the source/use of funds received. In 2025, OAA received $100,612 in total revenue, including contributions and grants, program service revenue, investment income,
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
Sannae, Methylmalonic Acidemia, (MMA Mut 0) “I was only just born when my parents started to feel that something wasn’t right with my health,” Sannae says. “I had trouble eating and was weak and lethargic. I also looked very pale.
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
Insurance coverage can fall short, but help is available. Recap from today’s NORD webinar on insurance coverage of medical foods and nutrition, plus an update on OAA’s Patient Assistance Program For families managing MMA, PA, CblC deficiency, GA-1, and other
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
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