DIG PKU e.V.
The DIG - PKU was established in December 1975 asan association of 8 parents whose children were diagnosed with PKU. Today the DIG - PKU has about 1,730 members. Although primarily for PKU sufferers, it is also concerned with related protein metabolism disorders.
Verein für Angeborene Stoffwechselstörungen (VfASS)
The interest group for all parents and affected persons with congenital metabolic disorders was founded in Berlin in 1979. Since 2008/2009 the association has been active nationwide. In addition to PKU patients, those with urea cycle defects, organoaciduria, galactosemia, fructose intolerance, etc. are also organized in the Association for Congenital Metabolic Disorders.