List of patients organisations

Patient organisations and support groups

We encourage all organisations that have homocystinuria, methylation and folate -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.

Country

Name of the Organisation
Website / E-mail

Belgium

BOKS vzw - Belgische Organisatie voor Kinderen en Volwassenen met een Stofwisselingsziekte VZW
Website: www.boks.be

Croatia

Hrvatska udruga za rijetke bolesti (Croatian Society for Rare Diseases)
Website: http://www.rijetke-bolesti.hr
E-mail: rijetke.bolesti@gmail.com

Udruga za pomoć obiteljima s fenilketonurijom (Association for support for families affected by phenylketonuria)
Website: http://www.fenilketonurija.hr
E-mail: sanjap@sumins.hr

Czech Republic

Česká asociace pro vzácná onemocnění (Czech Association for Rare Diseases)
Website: http://vzacna-onemocneni.cz/

National Association for PKU and other inherited metabolic disorder
Website: http://www.nspku.cz

Denmark

PND - Protein nedbrydningsdefekt foreningen
Website: http://www.pnd-foreningen.dk

France

Les maux d'enfants
E-mail: lesmauxdenfants@orange.fr

Les Enfants du Jardin - Association d'aide aux parents d'enfants atteints de maladies héréditaires du métabolisme traitées par régimes hypo protéinés
Website: http://www.lesenfantsdujardin.fr

A Tire d'aile
Website: http://asso.orpha.net/ATD
E-mail: atiredaile@levillage.org

Les Feux Follets - Association de parents d'enfants et d'adultes atteints de maladies héréditaires du métabolisme
Website: http://www.phenylcetonurie.org
E-mail: lesfeuxfollets@phenylcetonurie.org

Germany

DIG PKU - Deutsche Interessengemeinschaft Phenylketonurie und verwandte angeborene Stoffwechselstörungen e.V.
Website: http://www.dig-pku.de

Kindernetzwerk e. V.
Website: http://www.kindernetzwerk.de
E-mail: hubertus.vonvoss@t-online.de; schmid@kindernetzwerk.de

Greece

PASIFASMEN - Hellenic Association of Friends and Patients with rare metabolic and endocrinologic diseases
Website: http://www.pasyfasmen.gr

Ireland

Inclusion Ireland
Website: http://www.inclusionireland.ie
E-mail: info@inclusionireland.ie

Italy

APMMC - Associazione Prevenzione Malattie Metaboliche Congenite
Website: http://www.apmmc.it
E-mail: info@apmmc.it

ABM - Associazione per la Tutela del Bambino con Malattie Metaboliche
Website: http://www.abm-metaboliche.it
E-mail: info@abm-metaboliche.it

AMMeC - Associazione Malattie Metaboliche Congenite - ONLUS
Website: http://www.ammec.it
E-mail: ammec@ammec.it

META - Associazione Malattie Metaboliche Ereditarie del Piemonte e Valle d'Aosta
Website: http://www.meta-piemonte.it

IRIS - Associazione Siciliana Malattie Ereditarie Metaboliche Rare
Website: http://www.iris.too.it
E-mail: associazioneiris@libero.it

AISMME - Associazione Italiana Sostegno Malattie Metaboliche Ereditarie ONLUS
Website: http://www.aismme.org
E-mail: info@aismme.org

COMETA ASMME - Associazione Studio Malattie Metaboliche Ereditarie - ONLUS
Website: http://www.cometaasmme.org
E-mail: info@cometaasmme.org

Netherlands

VKS - Volwassenen en Kinderen met Stofwisselingsziekten
Website: http://www.stofwisselingsziekten.nl
E-mail: info@stofwisselinqsziekten.nl

Poland

Polish PKU and Rare Diseases Association "Ars Vivendi"
Website: http://www.fenyloketonuria.org
E-mail: arsvivendi@neostrada.pl

Krajowe Forum na rzecz terapii chorób rzadkich “Orphan”
Website: http://www.rzadkiechoroby.pl
E-mail: sekretariat@rzadkiechoroby.pl

Portugal

APOFEN - Associaçao Portuguesa de Fenilcetonúria e Outras Doenças Metabólicas
Website: http://apofen.org.pt
E-mail: apofen@iqm.min-saude.pt

Romania

Organizatia trebuie- Bacau
E-mail: trebuiebc@yahoo.com

Spain

Asociación Fenilcetonuria y Otros Trastornos del Metabolismo de Andalucia
E-mail: metabolicos@hotmail.es

Castilian-Manchego inborn errors of metabolism association
E-mail: castillalamancha@metabolicos.es

ASFEMA - Asociación de Fenilcetonúricos y otros Trastornos del Metabolismo de Madrid
E-mail: susana.gonzalesp@madrid.org

ADAC - Asociación para las Deficiencias que afectan al Crecimiento y al Desarrollo

Sweden

Swedish Association for Persons with Neurological Disabilities
Website: http://www.nhr.se
E-mail: stefan.kall@nhr.se

Switzerland

ProRaris Alliance Maladies Rares – Suisse Allianz Seltener Krankheiten – Schweiz Alleanza Malattie Rare - Svizzera
Website: www.proraris.ch
E-mail: contact@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
Website: http://www.nucdf.org/

United Kingdom

CLIMB - Children Living with Inherited Metabolic Diseases
Website: http://www.climb.org.uk