Frontpage Slideshow | Copyright © 2006-2011 JoomlaWorks Ltd.

Click here to register now!

The Organic Acidemia Patient Insights Network puts patients at the center.

The OA PIN has been created to collect and organize information about individuals of all ages who have a diagnosis of an organic acidemia - including:

  • (MHBD) 2-Methyl-3-Hydroxybutyrl CoA Dehydrogenase deficiency
  • (2MBCD) 2-Methylbutyryl-CoA Dehydrogenase Deficiency
  • (HMG) 3-hydroxy-3 -methylglutaryl-CoA lyase deficiency
  • (3-MCC) 3-methylcrotonyl- CoA carboxylase deficiency
  • (MGA) 3-Methylglutaconic acidemia or 3-Methylglutaconyl-CoA Hydratase Deficiency
  • 5-oxoprolinemia
  • (D2-HGA) D-2 Hydroxyglutaric Aciduria
  • (GA-I) Glutaryl CoA Dehydrogenase Deficiency Type I aka Glutaric Acidemia Type I
  • (ICBD) Isobutyryl-CoA Dehydrogenase Deficiency 3-Hydroxyisobutyric aciduria
  • (IVA) Isovaleryl CoA Dehydrogenase Deficiency aka Isovaleric Acidemia
  • (L2HGA) L-2-Hydroxy- glutaricaciduria
  • (MA) Malonyl-CoA Decarboxylase Deficiency aka Malonic Acidemia
  • (MMA) Methlymalonic Acidemia (all mutations, including CMAMMA)
  • (BKT) Mitochondrial Acetoacetyl CoA Thiolase- (3-Ketothiolase)
  • (MCD, holocarboxylase synthetase) Multiple carboxylase deficiency
  • (PA) Propionyl CoA Carboxylase Deficiency aka Propionic Acidemia
  • (HIBCH) 3-Hydroxyisobutyryl-CoA Hydrolase Deficiency)

The OA PIN is a unique online tool that helps empower patients, families, clinicians and researchers to work together to expand what is known about these disorders. 

This OA PIN makes it easy for you to share your family's experience, contribute medical data, and maintain your privacy while being connected to the latest research, treatment and disease education opportunities. 

Phones and tablets may default the first letter to uppercase.

What is a Patient Insights Network?

A Patient Insights Network, or PIN, is more powerful than a traditional patient registry. It is an interactive, online platform for surveying disease communities, uploading medical records, tracking health outcomes and sharing de-identified disease data. It’s HIPAA compliant, secure and research-ready.

This PIN can help generate research and academic interest in Organic Acidemia. It can expedite trial recruitment and ultimately generate more progress towards treatments and cures. By adding your family's information to this PIN, you help amplify the patients voice to bring solutions to the Organic Acidemia community.