Following a busy spring attending conferences including GIMD, SIMD, and the ROAR consortium kick-off, it was incredibly energizing to pause and connect directly with the community during our recent OAA Town Hall.

For those who were able to join us live, thank you for bringing your questions, your insights, and your ongoing dedication to the organic acidemia community. The strength of our advocacy, from expanding newborn screening to driving natural history studies, relies entirely on this kind of active engagement.

We covered a lot of ground during the session, and we know that balancing family, medical appointments, and daily life means not everyone could make it to the live broadcast. If you missed the discussion or simply want to review the updates shared by our team, the full recording is now available to watch on our YouTube channel.

Watch the Town Hall Recording Here: OAA Town Hall

During the presentation, our team covered several major updates and goals for the coming year. We announced that the next OAA Family Forum will take place June 25–26, 2027, in Bloomington, Minnesota. We also highlighted the ongoing impact of our Patient Assistance Program, which awarded thousands of dollars in grants for metabolic formulas and specialized supplements in 2025 and 2026. To make research more accessible, we walked through recent updates to The Cofactor e-newsletter and our website, which now features dedicated, easy-to-navigate sections for scientific research, observational studies, and clinical trials. We were especially excited to celebrate the growth of the Organic Acidemia Natural History Registry, which has successfully migrated to the NORD 2.0 platform and surpassed 200 participants. Finally, we discussed our participation in the $8.2 million NIH-funded ROAR Consortium and invited everyone to join our upcoming webinar on June 28th, which will focus on breaking down clinical trials and natural history studies

Your Voice Still Matters: Share Your Feedback During the town hall, we launched a few polls to better understand your priorities and perspectives. If you watched the recording or couldn’t participate in the live polls, it is not too late to weigh in! Your feedback directly shapes our roadmap, whether we are making improvements to the patient registry, evaluating new partnerships, or planning future educational resources.

Please take a few moments to share your thoughts through the links below:

Vote anonymously here 

Thank you for your continuous support and for being such an integral part of the OAA family. We look forward to hearing your feedback and keeping this vital conversation going.