OAA Welcomes Two New Board Members The Organic Acidemia Association is welcoming two new board members, Jenni Jaehnke and Steph Mustin. Jenni Jaehnke is the parent of a son with Propionic Acidemia. Having had a liver transplant when he was
Glutaric Aciduria Type 1 Natural History Study Dr. Curtis Coughlin is partnering with a pharmaceutical company to conduct a natural history study of glutaric aciduria type 1 (GA-1). The goal of this study is to better understand this disorder and
Hope to see you in Minnesota in June 2027!More information to come….save the date!
GA-1 Natural History Webinar February 25, 2026 – 12PM MDTZoom link: https://ucdenver.zoom.us/j/98886758263 The Coughlin Lab, in partnership with a pharmaceutical company, is conducting a natural history study of Glutaric Acidemia Type 1 (GA1) to improve our understanding of disease progression,
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
Meet your new OAA Research Program Manager I’m Haley Stubbs, the new Research Program Manager for OAA. Here are some things to know about me! I earned my PhD from Vanderbilt University in biochemistry and structural biology. I am also
Our Kids / Rare Disease Day 2026 OAA Tshirt Fundraiser We are stronger together!Spread the word – purchase a shirt here:https://stores.thecoloredribbon.com/oaastore/shop/homeOAA receives a portion of the sales to continue our mission of supporting and advocating for those with organic acidemias!OAA
Upgraded Organic Acidemia Natural History Registry! The Organic Acidemia Natural History Registry has migrated to a new platform! Current participants will be sent an email to activate their account on the new platform. Not a participant yet? Sign up now
NIH awards more than $15 million to fund two rare diseases consortia Baylor College of Medicine has received new funding from the National Institutes of Health for two consortia in the Rare Diseases Clinical Research Network: $7.4 million over five years
Summer 2025 OAA Newsletter The digital version of the Summer 2025 Newsletter is available now. Our new Summer 2025 OAA Newsletter is here! Explore inspiring family journeys, updates on the OAA registry, new medical advisor, and more. OAA-Summer-2025-Final If you wish
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