Advocacy, Data, and Regulatory Momentum: Highlights from the 2026 NORD Breakthrough Summit In late October, Research Program Manager Haley Stubbs, PhD represented the Organic Acidemia Association (OAA) in Washington, D.C., at the 2026 NORD Breakthrough Summit, as well as the
Beyond the Diagnosis: Meet the Creators Making Their Mark While Living with Organic Acidemias From wellness entrepreneurship to artistic expression and social media storytelling, members of the organic acidemia community are using their creativity to connect with others and make
A Decade in the Making: Newborn Screening for PDE For families navigating rare inborn errors of metabolism, the newborn screening heel-prick represents a critical safety net: the difference between an early, proactive intervention and months of devastating diagnostic limbo. The
Finley – Pyridoxine Dependent Epilepsy (PDE) Finley was born via C-section due to a few complications. I was almost 42 weeks pregnant, and my body was not ready to give birth yet. Her heart rate started to drop when we
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,
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
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