We are a 501c3 non-profit organization made up of parents of children with organic acidemia metabolic disorders. Organic Acidemias are a group of inheritable genetic metabolic disorders in which there is a defect in protein metabolism where an essential enzyme is absent or malfunctioning.
Our mission is to empower families and health care professionals with knowledge in these disorders. We support early intervention through expanded newborn screening, solicit contributions, and distribute funding that supports research toward improved treatment, and eventual cures in the areas of Organic Acid disorders.
Learn more about the specific studies that are available by disease and find out how you can become a participant.
Need assistance with formula coverage? Looking for low protein resources? We’ve got it all here.
Read the latest research on new therapies on the horizon supporting treatment of rare diseases on our blog.
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 at: https://oaaregistry.iamrare.org
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 to renew the Brittle Bone Disorders Consortium (BBDC) and $8.2 million over five years to launch the Rare Organic Acidemias Research (ROAR) Consortium. Brittle Bone Disorders Consortium The BBDC aims to advance the study and treatment of
"The Organic Acidemia Association has been such a wonderful community for our family. When my son was first diagnosed with MMA, we were looking for more information, and the OAA provided us with access to resources and the ability to connect with other families that were in similar situations."
