Helpful Websites
For further information on the topic of metabolic disorders, the following links and websites may also be helpful.
Websites:
Homepage of the German-speaking self-help group Fett-SOS e.V. support group for inborn fatty acid oxidation disorders
Homepage with information on long-chain fatty acid oxidation disorders: nutrition, recipes, everyday tips and more.
German-language online forum for long-chain fatty acid oxidation disorders
International online forum for those affected with rare diseases, also with sub-forums for LCHAD / TFP deficiency and VLCAD deficiency. The site has an integrated translation function into several European languages.
English speaking support group for fatty acid oxidation disorders
English speaking non-profit organization for families effected by mitochondrial disease and/or fatty acid oxidation disorders. Support groups and educational seminars/materials offered.
International Network for Fatty Acid Oxidation Research and Management – A global scientific organization focused on FAODs and related enzymatic disorders involving the carnitine transport cycle.
This website provides an emergency letter generator for patients with fatty acid oxidation disorders (FAOD) and glycogen storage diseases (GSD). Translations are available in several European languages.