The APS is very concerned with cooperating closely with patients and affected associations. At the annual meeting patient groups have the opportunity to participate or to present themselves.

Below are links to some patient groups. This list is not yet complete.

If you want us to link to more sites here, feel free to contact one of the webmasters. Please send us also the current logo of your group.


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.