Orphanet is a unique resource that provides high-quality information on rare diseases, as well as maintaining the Orphanet rare disease nomenclature (ORPHAnumber), essential in improving the visibility of rare diseases in health and research information systems.

The Organic Acidemia Association is a US-based, non-profit organization whose mission is to empower families and health care professionals with knowledge about organic acidemia metabolic disorders, as well as advocating early intervention through expanded newborn screening, and raising and distributing funding for research toward improved treatment and eventual cures.