OAA Connects with Metabolic Professionals at SIMD NAMA Training Kathy Stagni, Executive Director of the Organic Acidemia Association, represented OAA at the SIMD/NAMA Foundations 2026 training in the Chicago area on October 5. At the OAA exhibit, Kathy shared information
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,
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.
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
Webinar Recap: NIH Research Updates with Dr. Venditti https://youtu.be/wSKwmfyrZhE With our biennial Family Conference pushed to next summer, OAA hosted a special research webinar to keep our community connected to the latest developments at the National Institutes of Health. We
Hearts Enteral DME Update Hearts Enteral DME has grown to a team of nearly 20 employees since 2019 (inception), and we continue to expand. We now serve more than 500 + patients and have dedicated departments for patient intake staffed
Research Summary: Dr. Charles Venditti’s research at ASGCT 2026 Dr. Charles Venditti is a Senior Investigator and Head of the Organic Acid Research Section at the National Human Genome Research Institute (NHGRI), part of the National Institutes of Health. A
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