We encourage all organisations that have urea cycle disorder or organic academia -related web sites to please share them with us. Our network is designed with you and your knowledge in mind. Help us stay informed and on top of the latest ideas. Please contact us.
Urea cycle and organic academia –related patient organisations and support groups:
| Country | Name of the Organisation | Website / E-mail |
|---|---|---|
| Belgium | BOKS vzw - Belgische Organisatie voor Kinderen en Volwassenen met een Stofwisselingsziekte VZW | www.boks.be |
| Croatia | Hrvatska udruga za rijetke bolesti (Croatian Society for Rare Diseases) | |
| Croatia | Udruga za pomoć obiteljima s fenilketonurijom (Association for support for families affected by phenylketonuria) | |
| Czech Republic | National Association for PKU and other inherited metabolic disorder | http://www.nspku.cz |
| Denmark | PND - Protein nedbrydningsdefekt foreningen | http://www.pnd-foreningen.dk |
| France | Les maux d'enfants | lesmauxdenfants@orange.fr |
| France | Les Enfants du Jardin - Association d'aide aux parents d'enfants atteints de maladies héréditaires du métabolisme traitées par régimes hypo protéinés | http://www.lesenfantsdujardin.fr |
| France | A Tire d'aile | |
| France | Les Feux Follets - Association de parents d'enfants et d'adultes atteints de maladies héréditaires du métabolisme | |
| Germany | Selbsthilfegruppe Glutarazidurie e. V. | http://www.glutarazidurie.de Opm: Glutaric aciduria type 1 is een OAD |
| Germany | DIG PKU - Deutsche Interessengemeinschaft Phenylketonurie und verwandte angeborene Stoffwechselstörungen e.V. | http://www.dig-pku.de Opm: organoacid¨mien worden expliciet vermeld op de site |
| Germany | Kindernetzwerk e. V. | http://www.kindernetzwerk.de  |
| Germany | Glutarazidurie e. V. | http://www.glutarazidurie.de |
| Greece | PASIFASMEN - Hellenic Association of Friends and Patients with rare metabolic and endocrinologic diseases | http://www.pasyfasmen.gr |
| Ireland | Inclusion Ireland | http://www.inclusionireland.ie info@inclusionireland.ie Opm: ik weet niet of deze PO in aanmerking komt |
| Italy | APMMC - Associazione Prevenzione Malattie Metaboliche Congenite | |
| Italy | ABM - Associazione per la Tutela del Bambino con Malattie Metaboliche | |
| Italy | AMMeC - Associazione Malattie Metaboliche Congenite - ONLUS | |
| Italy | META - Associazione Malattie Metaboliche Ereditarie del Piemonte e Valle d'Aosta | http://www.meta-piemonte.it |
| Italy | IRIS - Associazione Siciliana Malattie Ereditarie Metaboliche Rare | |
| Italy | AISMME - Associazione Italiana Sostegno Malattie Metaboliche Ereditarie ONLUS | |
| Italy | COMETA ASMME - Associazione Studio Malattie Metaboliche Ereditarie - ONLUS | |
| Netherlands | VKS - Volwassenen en Kinderen met Stofwisselingsziekten | |
| Poland | Polish PKU and Rare Diseases Association "Ars Vivendi" Krajowe Forum na rzecz terapii chorób rzadkich “Orphan” |
|
| Portugal | APOFEN - Associação Portuguesa de Fenilcetonúria e Outras Doenças Metabólicas | |
| Romania | Organizatia trebuie- Bacau | |
| Spain | Asociación Fenilcetonuria y Otros Trastornos del Metabolismo de Andalucia | |
| Spain | Castilian-Manchego inborn errors of metabolism association | |
| Spain | ASFEMA - Asociación de Fenilcetonúricos y otros Trastornos del Metabolismo de Madrid | |
| Spain | ADAC - Asociación para las Deficiencias que afectan al Crecimiento y al Desarrollo | |
| Sweden | Swedish Association for Persons with Neurological Disabilities | |
| Switzerland | ProRaris Alliance Maladies Rares – Suisse Allianz Seltener Krankheiten – Schweiz Alleanza Malattie Rare - Svizzera | www.proraris.ch |
| USA | The National Urea Cycle Disorders Foundation is a non-profit organization dedicated to the identification, treatment and cure of urea cycle disorders. NUCDF is a nationally-recognized resource of information and education for families and healthcare professionals | http://www.nucdf.org/ |
| UK | CLIMB - Children Living with Inherited Metabolic Diseases |
