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Table 1 Contributing EGA member organisations

From: The European Gaucher Alliance: a survey of member patient organisations’ activities, healthcare environments and concerns

Country Organisation Scope
Austria Österreichische Gaucher Gesellschaft/Austrian Gauchers Association Gaucher disease
Belgium Belgische Organisatie voor Kinderen en Volwassesn met en Stofwisselingsziekte/Belgian Association for Metabolic Diseases Metabolic diseases
Bosnia & Herzegovina Udruženje oboljelih od rijetkih bolesti u Bosni i Hercegovini/Association of people with rare diseases in Bosnia & Herzegovina Rare diseases
Bulgaria / National Association of Gaucher patients in Bulgaria Gaucher disease
Canada National Gaucher Foundation of Canada Gaucher disease
Czech Republic Občanské sdružení rodičů dětí a dospělých postižených Gaucherovou chorobou/Czech Gaucher Association Gaucher disease
Denmark Gaucher Foreningen i Danmark/Gaucher Association Denmark Gaucher disease
Estonia Gaucher Eesti MTÜ/Estonian Gaucher Association Gaucher disease
Finland Suomen Gaucher Yhdistys/Finnish Gaucher Association Gaucher disease
Germany Gaucher Gesellschaft Deutschland/German Gaucher Association Gaucher disease
Greece Πανελλήνιος Σύλλογος Ασθενών & Φίλων Πασχόντων από λυσοσωμικά Νοσήματα ‘Η Αλληλεγγύη’/Patients and friends of those suffering from lysosomal storage disorders `The Solidarity’ LSDs
Israel Israeli Gaucher Association/ Gaucher disease
Italy Associazione Italiana Gaucher/Italian Gaucher Association Gaucher disease
Jordan Jordanian Gaucher Association/ Gaucher disease
Latvia Reto slimību biedrība “Caladrius”/Society of Rare Diseases Caladrius Rare diseases
Lithuania Lietuvos Gošė Asociacija/Lithuania Gaucher Association Gaucher disease
Macedonia Здружение на граѓани за ретки болести “Живот со Предизвици” – Битола/Association of citizens for rare diseases - Life with Challenges Rare diseases
Mexico Asociacion Gaucher de Mexico/Gaucher Association of Mexico Gaucher disease
Mexico Proyecto Pide un Deseo México, i.a.p./Make a Wish Project LSDs
The Netherlands VKS - Diagnosegroep Gaucher/Gaucher Diagnosis Group Metabolic diseases
Norway Gaucher Foreningen Norge/Gaucher Association Norway Gaucher disease
Poland Stowarzyszenie Rodzin z Chorobą Gauchera/Association of Families with Gaucher disease Gaucher disease
Romania Fundatia Romana Pentru Bolile Lizozomale/Romanian Foundation for Lysosomal Diseases LSDs
Russia /Interregional non-government organization “Assistance to invalids suffering from Gaucher disease and their families” Gaucher disease
Serbia Udruženje gradjana za pomoć u lečenju obolelih od Gošeove bolesti (UGOŠ)/Association for help in treatment of patients suffering from Gaucher’s disease Gaucher disease
Slovenia Društvo bolnikov z gaucherjevo boleznijo Slovenije/Slovenian Gaucher Association Gaucher disease
South Africa The Gaucher and LSD Society of South Africa Gaucher disease/LSDs
Spain Asociación Española de Enfermos y Familiares de la Enfermedad de Gaucher/Spanish association of Gaucher patients and their relatives Gaucher disease
Sweden Morbus Gaucherföreningen i Sverige/Swedish Gaucher Disease Association Gaucher disease
Switzerland Vaincre les Maladies Lysosomales - Suisse/Swiss Association for Overcoming Lysosomal Storage Disorders LSDs
UK & Republic of Ireland (RoI) The Gauchers Association Gaucher disease
Ukraine /All-Ukrainian Gaucher Association Gaucher disease
USA National Gaucher Foundation Gaucher disease