National Patient Organizations

In 2009, Genzyme collaborated with and supported the national patient organizations (PO) listed below. National organizations are defined as patient organizations that are registered in a European country and are active at a country specific level and/or only have members from that country. For the purpose of this listing, patient organizations are listed by country of scope, which may differ from their country of registration.

Global

European

National

• AUSTRIA

  PATIENT ORGANIZATION	DISEASE COMMUNITY	TYPE OF SUPPORT
  Myelom & Lymphom Hilfe Öseterreich	Austrian Patient Organisation for MPS and other diseaeses	Financial support for patient / public education and awareness on disease(s)
  Österreichische Gaucher Gesellschaft	Gaucher	General financial support
  Patientenorganisation für Mukopolysaccharidosen und ähnliche Erkrankungen	Mucopolysaccharidoses	General financial support
  Selbsthilfeorganisation Morbus Pompe Österreich	Pompe	General financial support
  Verein für Lebertransplantierte	Organ transplant	Financial support for meeting(s) organized by PO
  Verein Nephro Tirol (Selbsthilfeverein für Dialysepatienten und Nierentransplantierte)	Kidney diseases	Financial support for meeting(s) organized by PO

  
  

• BELGIUM

  PATIENT ORGANIZATION	DISEASE COMMUNITY	TYPE OF SUPPORT
  Fenier-Fabir	Kidney	Financial support for patient / public education and awareness on disease(s)
  Belgische Oranisatie voor Kinderen en volwassenen met een stofwisselingsziekte (Boks)	Metabolic diseases	Financial support for meeting(s) organized by PO, Financial support for PO's attendance to meeting(s)
  Association Belge contre les Maladies neuro-Musculaires (ABMM)	Neuromuscular diseases	Financial support for meeting(s) organized by PO
  Vlaamse Verenigng Neuromusculaire aandoeningen (Nema)	Neuromuscular diseases	General financial support
  MS Liga Vlaanderen	Other	General financial support

  
  

• BULGARIA

  PATIENT ORGANIZATION	DISEASE COMMUNITY	TYPE OF SUPPORT
  Национална Асоциация на Болните от Гоше	Gaucher	General financial support Financial support for PO's attendance to meeting(s) Financial support of Public Relations activities of PO
  Фондация на Пациентите с ХБН и хемодиализираните в България	Kidney diseases	General financial support
  Национален Алианс на Хората с Редки Болести	All Patients	Financial support for patient/ public education and awareness on disease(s) Financial support for PO's attendance to meeting(s) Financial support for meeting(s) organized by PO
  Асоциация на Пациентите с Онкологични Заболявания и приятели	Cancer	Financial support for meeting(s) organized by PO, General financial support
  Конфедерация Защита на Здравето	All Patients	Financial support for PO's attendance to meeting(s)

  
  

• CROATIA

  PATIENT ORGANIZATION	DISEASE COMMUNITY	TYPE OF SUPPORT
  Hrvatska udruga bolesnika s rijetkim bolestima	Rare diseases	Financial support for patient/ public education and awareness on disease(s) Financial support for PO's attendance to meeting(s)
  Hrvatska udruga bubrežnih bolesnika na peritonejskoj dijalizi	Kidney diseases	Financial support for patient / public education and awareness on disease(s)
  Udruga invalida distroficara Primorsko-Goranske županije	Neuromuscular	Financial support for patient / public education and awareness on disease(s)
  Udruga oboljelih i liječenih od malignih bolesti ‘’Za novi dan’’	Kidney diseases	Financial support for patient/ public education and awareness on disease(s)
  Udruga za promicanje i unapređenje zdravstvene kulture - INFO	Kidney diseases	Financial support of Public Relations activities of PO

  
  

• CZECH REPUBLIC

  PATIENT ORGANIZATION	DISEASE COMMUNITY	TYPE OF SUPPORT
  Sdružení META – sdružení pacientů se střádavými onemocněními, o. s.	Metabolic diseases	Financial support for PO's attendance to meeting(s)

  
  

• DENMARK

  PATIENT ORGANIZATION	DISEASE COMMUNITY	TYPE OF SUPPORT
  Gaucher Foreningen	Gaucher	General financial support Financial support for meeting(s) organized by PO
  Fabry Patient Foreningen	Fabry	Financial support of patient care related project(s)

  
  

• FINLAND

  PATIENT ORGANIZATION	DISEASE COMMUNITY	TYPE OF SUPPORT
  Suomen Fabry Potiaayhdistys	Fabry	Financial support for healthcare professional education and awareness on disease(s) Financial support for PO's attendance to meeting(s)
  Suomen Gaucher Potiaayhdistys	Gaucher	General financial support

  
  

• FRANCE

  PATIENT ORGANIZATION	DISEASE COMMUNITY	TYPE OF SUPPORT
  Ligue Rein et Santé (LRS)	Kidney diseases	Financial support for patient/ public education and awareness on disease(s)
  Fédération Nationale d'Aide aux Insuffisants Rénaux (FNAIR)	Kidney diseases	Financial support for meeting(s) organized by PO
  Renaloo	Kidney diseases	Financial support for patient/ public education and awareness on disease(s)
  Association pour l'Information et la Recherche sur les maladies Rénales Génétiques (AIRG)	Genetic diseases	Financial support for patient / public education and awareness on disease(s)
  Association de Patients de la Maladie de Fabry (APMF)	Fabry	Financial support for meeting(s) organized by PO
  Vaincre les Maladies Lysosomales (VML)	Lysosomal Storage Disorders	Financial support for patient/ public education and awareness on disease(s)
  Vaincre les Maladies Lysosomales (VML) Marocco	Lysosomal Storage Disorders	Financial support for meeting(s) organized by PO
  Vivre sans Thyroïde	Thyroïd diseases	Financial support for PO's attendance to meeting(s)

  
  

• GERMANY

  PATIENT ORGANIZATION	DISEASE COMMUNITY	TYPE OF SUPPORT
  ArthroseLiga e.V.	Arthritic	General financial support
  Bundesverband Niere e.V.	Kidney diseases	Financial support for meeting(s) organized by PO
  Deutsche Gesellschaft für Muskelkranke e.V.	Neuromuscular diseases	General financial support
  Deutsche Gesellschaft für Rehabilitationssport für chronisch Nierenkranke e.V.	Kidney diseases	Financial support of patient care related project
  Deutsche Gesellschaft zur Bekämpfung von Fettstoffwechselstörungen und ihren Folgeerkrankungen DGFF (Lipid-Liga) e.V.	Metabolic diseases	Financial support for patient / public education and awareness on disease(s) Financial support of Public Relations activities of PO
  Deutsche Kinderkrebsstiftung, Bonn	Cancer	Financial support of patient care related project
  Dialysepatienten Deutschland Region Eberswalde	Kidney diseases	Non-financial support
  Dialyseverein Köln & Leverkusen	Kidney diseases	Financial support of patient care related project
  Gaucher Gesellschaft Deutschland e. V.	Gaucher	General financial support Financial support for PO's attendance to meeting(s)
  Herz- und Diabeteszentrum Bad Oeynhausen	Kidney diseases	General financial support
  Herzkind e.V.	Cardiac	Financial support of patient care related project
  IG Künstliche Niere und Transplantation Berlin (IKN) e.V.	Kidney diseases	Non-financial support
  Interessengemeinschaft der Dialysepatienten Saar e.V. GBZ der Alois-Lauer-Stiftung	Kidney diseases	Financial support for meeting(s) organized by PO
  Interessengemeinschaft der Dialysepatienten und Nierentransplantierten e.V., Würzburg	Kidney diseases	Financial support of patient care related project and financial support for meeting(s) organized by PO
  Interessengemeinschaft der Dialysepatienten und Nierentransplantierter in Bayern e.V.	Kidney diseases	Financial support of patient care related project(s)
  Interessengemeinschaft Nieren Region Kiel e.V.	Kidney diseases	Financial support of patient care related project(s)
  Interessenverein der Dialysepatienten und Nierentransplantierten Leipzig e.V	Kidney diseases	Financial support of patient care related project(s)
  Landesverband Nierenkranker, Dialysepatienten und Transplantierten Niedersachsen e.V., Regionalgruppe Göttingen	Kidney diseases	Financial support of patient care related project(s)
  Landesverband Nierenkranker, Dialysepatienten und Transplantierten Niedersachsen e.V., Regionalgruppe Lingen	Kidney diseases	Financial support of patient care related project(s)
  Landesverband Nierenkranker, Dialysepatienten und Transplantierten Niedersachsen e.V., Regionalgruppe Vechta, Cloppenburg, Bassum, Diepholz	Kidney diseases	Financial support of patient care related project(s)
  Landesverband Nierenkranker, Dialysepatienten und Transplantierter Niedersachsen e.V.	Kidney diseases	Financial support of patient care related project(s)
  Morbus Fabry Selbsthilfegruppe e.V.	Fabry	Financial support for meeting(s) organized by PO
  MPS-Gesellschaft e.V.	Mucopolysaccharidoses	Financial support for meeting(s) organized by PO, financial support of patient care related project and financial support of Public Relations activities of PO
  Niemann-Pick Selbsthilfegruppe e.V.	Niemann-Pick	Financial support for meeting(s) organized by PO
  Ohne Schilddruse Leben	Thyroïd diseases	Financial support for PO's attendance to meeting(s)
  PKD Familiäre Zystennieren e.V.	Kidney diseases	Financial support for meeting(s) organized by PO and financial support of patient care related project
  Schilddrüsen-Liga Deutschland e.V.	Thyroïd diseases	Financial support of Public Relations activities of PO
  Selbsthilfegruppe Potsdam	Kidney diseases	Non-financial support
  Selbsthilfegruppe Wetzlar	Kidney diseases	Non-financial support
  SHG Glukogenose Deutschland e.V.	Glycogen Storage Disorders	Financial support of Public Relations activities of PO, financial support for meeting(s) organized by PO and non-financial support
  SHG Niere Rhein-Ahr-Eifel e.V., Kreis Euskirchen	Kidney diseases	Financial support of patient care related project
  Universitätsklinikum Hamburg-Eppendorf - Abt. für pädiatrische Hämatologie-Onkologie und der Einrichtung für Knochenmarktransplantation	Cancer	General financial support
  Verband für Ernährung und Diätetik (VFED) e.V., Aachen	Other	Financial support of patient care related project

  
  

• GREECE

  PATIENT ORGANIZATION	DISEASE COMMUNITY	TYPE OF SUPPORT
  Πανελλήνια Ένωση Σπανίων Παθήσεων (ΠΕΣΠΑ) Pan Hellenic Alliance of Rare Diseases	Rare diseases	General financial support Financial support for patient / public education and awareness on disease(s)
  Πανελλήνια Ένωση Σπανίων Παθήσεων (ΠΕΣΠΑ) Pan Hellenic Alliance of Rare Diseases (PESPA)	Rare diseases	General financial support
  Πανελλήνιος Σύλλογος Ασθενών Και Φίλων Πασχόντων Από Νόσο GAUCHER Και Άλλες Λυσοσωμικές Διαταραχές "Η Αλληλεγγύη"	Lysosomal Storage Disorders	General financial support Financial support for meeting(s) organized by PO Financial support for PO's attendance to meeting(s)
  Πανελλήνιος Σύλλογος Νεφροπαθών	Kidney diseases	Financial support for meeting(s) organized by PO
  Πανελλήνιος Σύνδεσμος Νεφροπαθών	Kidney diseases	Financial support for meeting(s) organized by PO

  
  

• HUNGARY

  PATIENT ORGANIZATION	DISEASE COMMUNITY	TYPE OF SUPPORT
  Alapitvány a Pompe betegekért	Pompe	General financial support
  Alapítvány az ALS betegekért	Neuromuscular	General financial support
  Hipertóniás és vesebetegekért Alapítvány, Pécs	Kidney diseases	General financial support
  Mukopoliszacharidózis Társaság	Mucopolysaccharidoses	Financial support for meeting(s) organized by PO
  Vesebetegek Nógrádmegyei Szervezete	Kidney diseases	General financial support

  
  

• ISRAEL

  PATIENT ORGANIZATION	DISEASE COMMUNITY	TYPE OF SUPPORT
  אמ"ן עמותה לחולי מיאלומה	Cancer	Financial support for meeting(s) organized by PO
  העמותה הישראלית לגושה	Gaucher	Financial support of patient care related project(s) Financial support for meeting(s) organized by PO Financial support for patient / public education and awareness on disease(s)
  העמותה לזכויות החולה	All Patients	Financial support for meeting(s) organized by PO
  עמותת חולי כליות ומושתלים	Kidney diseases	Financial support for meeting(s) organized by PO

  
  

• ITALY

  PATIENT ORGANIZATION	DISEASE COMMUNITY	TYPE OF SUPPORT
  Federazione Lombarda Malattie Rare	Rare diseases	General financial support
  Associazione Malati Tiroidei (AMT)	Cancer	General financial support
  Cittadinanzattiva Onlus	All Patients	General financial support
  Associazione Italiana Basedowiani e Tiroidei (AIBAT)	Thyroïd diseases	Financial support for patient / public education and awareness on disease(s)
  Associazione Italiana Gaucher (AIG) - Onlus	Gaucher	General financial support
  Associazione Italiana Pazienti Anderson-Fabry (AIPAF)	Fabry	General financial support Financial support for PO's attendance to meeting(s)
  Gruppo Italiano Pazienti Fabry (GIPF)	Fabry	General financial support
  Associazione Italiana Mucopolisaccaridosi e Malattie affini (AIMPS)	Mucopolysaccharidoses	General financial support Indirect financial support Financial support for PO's attendance to meeting(s)
  Federazione Italiana del Rene Onlus (FIR)	Kidney diseases	General financial support
  Associazione Italiana Niemann-Pick	Niemann-Pick	General financial support
  Uniamo Federazione Italiana Malattie Rare onlus	Rare diseases	General financial support

  
  

• LATVIA

  PATIENT ORGANIZATION	DISEASE COMMUNITY	TYPE OF SUPPORT
  Biedriba " Reto slimibu biedriba Caladrius"	Rare diseases	Financial support of Public Relations activities of PO

  
  

• LITHUANIA

  PATIENT ORGANIZATION	DISEASE COMMUNITY	TYPE OF SUPPORT
  Nervu ligomis serganciu vaiku labdaros ir paramos fondas	Neurological	Financial support for disease research

  
  

• THE NETHERLANDS

  PATIENT ORGANIZATION	DISEASE COMMUNITY	TYPE OF SUPPORT
  Stichting Fondsenwerving Nierpatientenvereniging	Kidney	General financial support
  Stichting Facioscapulohumerale dystrofie	Neuromuscular diseases	General financial support
  Fabry Support & Informatie Groep Nederland	Fabry	Financial support of patient care related project(s) Financial support for PO's attendance to meeting(s)
  Gaucher Vereniging Nederland	Gaucher	Financial support of patient care related project(s)
  Vereniging 'Ouders, Kinderen en Kanker"	Cancer	General financial support
  Vereniging Spierziekten Nederland	Neuromuscular diseases	General financial support
  Vereniging voor Volwassenen en Kinderen met Stofwisselingsziekten	Genetic diseases	Financial support for PO's attendance to meeting(s) General financial support Non financial support
  Nierpatienten Vereniging Nederland	Kidney diseases	Financial support of patient care related project
  Nierpatientenvereniging Catharina Ziekenhuis	Kidney diseases	Financial support of patient care related project
  Nierpatientenvereniging De Gelderse Vallei	Kidney diseases	Financial support of patient care related project
  Nierstichting Nederland	Kidney diseases	Financial support of patient care related project
  Vereniging Samenwerkende Ouder- en Patiëntenorganisaties	Genetic diseases	Non financial support Financial support for meeting organised by PO

  
  

• NORWAY

  PATIENT ORGANIZATION	DISEASE COMMUNITY	TYPE OF SUPPORT
  Fabry Patientforening	Fabry	Financial support for meeting(s) organized by PO

  
  

• POLAND

  PATIENT ORGANIZATION	DISEASE COMMUNITY	TYPE OF SUPPORT
  Stowarzyszenie Chorych na Mukopolisacharydozę i Choroby Pokrewne	Mucopolysaccharidoses	Financial support for patient / public education and awareness on disease(s)
  Stowarzyszenie Rodzin z Chorobą Fabry'ego	Fabry	Financial support for PO's attendance to meeting(s)

  
  

• PORTUGAL

  PATIENT ORGANIZATION	DISEASE COMMUNITY	TYPE OF SUPPORT
  Raríssimas - Associação Portuguesa de Doenças Raras e Mentais	Rare diseases	Financial support for patient/ public education and awareness on disease(s)
  APL - Associação Portuguesa das Doenças do Lisossoma	Lysosomal Storage Disorders	Financial support for patient/ public education and awareness on disease(s)
  APDT - Associação Portuguesa de Doentes da Tiróide	Thyroïd diseases	Non-financial support
  APIR - Associação Portuguesa de Insuficientes Renais	Kidney diseases	Financial support for meeting(s) organized by PO
  FEDRA - Federação das Doenças Raras de Portugal	Rare diseases	Financial support for patient/ public education and awareness on disease(s)

  
  

• ROMANIA

  PATIENT ORGANIZATION	DISEASE COMMUNITY	TYPE OF SUPPORT
  Romanian National Alliance for Rare Diseases	Rare diseases	Financial support for PO's attendance to meeting(s)

  
  

• RUSSIA

  PATIENT ORGANIZATION	DISEASE COMMUNITY	TYPE OF SUPPORT
  Межрегиональной общественной организацией «Содействие инвалидам с детства, страдающим болезнью Гоше, и их семьям	Gaucher	General financial support Financial support for patient/ public education and awareness on disease(s) Financial support for PO's attendance to meeting(s)
  Генетика	Genetic diseases	Financial support for PO's attendance to meeting(s)
  детства, страдающим болезнью Гоше, и их семьям	Mucopolysaccharidoses	Financial support for PO's attendance to meeting(s)
  Общество " Лизосмальные болезни накопления	Lysosomal Storage Disorders	Financial support for PO's attendance to meeting(s)
  организацией «Содействие инвалидам с	Rare diseases	Financial support for patient/ public education and awareness on disease(s) Financial support for PO's attendance to meeting(s)

  
  

• SERBIA

  PATIENT ORGANIZATION	DISEASE COMMUNITY	TYPE OF SUPPORT
  Savez Distroficara Srbije Beograd	Neuromuscular diseases	Financial support for meeting(s) organized by PO

  
  

• SLOVENIA

  PATIENT ORGANIZATION	DISEASE COMMUNITY	TYPE OF SUPPORT
  Zveza društev ledvičnih bolnikov Slovenije (ZDLBS)	Kidney diseases	Financial support for patient/ public education and awareness on disease(s)

  
  

• SPAIN

  PATIENT ORGANIZATION	DISEASE COMMUNITY	TYPE OF SUPPORT
  Asociación Española de Afectados de Linfoma, Mieloma y Leucemia	Cancer	Financial support of patient care related project(s)
  Asociación Española de Enfermos de Glucogenosis (AEEG)	Glycogen Storage Disorders	Financial support for meeting(s) organized by PO Financial support for PO's attendance to meeting(s)
  Asociación Española de las Mucopolisacaridosis y Síndromes Relacionados (MPS España)	Mucopolysaccharidoses	Financial support for meeting(s) organized by PO
  Asociación para las Enfermedades Dismorfológicas de Acúmulo Lisosomal y del Crecimiento (ADAC)	Lysosomal Storage Disorders	Financial support for meeting(s) organized by PO Financial support for PO's attendance to meeting(s)
  Federación Española de Enfermedades Raras (FEDER)	Rare diseases	Financial support for PO's attendance to meeting(s) General financial support
  Federación Española de Enfermedades Neuromusculares (ASEM)	Mucopolysaccharidoses	Financial support for meeting(s) organized by PO
  Asociación Española de Enfermos y Familiares de la Enfermedad de Gaucher (AEEFEG)	Gaucher	Financial support for meeting(s) organized by PO Financial support for PO's attendance to meeting(s)
  Fundación Renal ALCER España	Kidney diseases	Financial support for PO's attendance to meeting(s) General financial support

  
  

• SWEDEN

  PATIENT ORGANIZATION	DISEASE COMMUNITY	TYPE OF SUPPORT
  MPS Föreningen	Mucopolysaccharidoses	Financial support for meeting(s) organized by PO
  Nordisk Gaucher Föreningen	Lysosomal Storage Disorders	Financial support for meeting(s) organized by PO
  Patientföreningen för Farbryssjuka i Sverige	Fabry	Financial support for meeting(s) organized by PO

  
  

• SWITZERLAND

  PATIENT ORGANIZATION	DISEASE COMMUNITY	TYPE OF SUPPORT
  Fabrysuisse	Fabry	General financial support
  Lysosuisse	Lysosomal Storage Disorders	General financial support Financial support for PO's attendance to meeting(s)
  VML Suisse	Lysosomal Storage Disorders	General financial support
  AIRG Suisse	Fabry	Financial support for patient/ public education and awareness on disease(s)

  
  

• UNITED KINGDOM

  PATIENT ORGANIZATION	DISEASE COMMUNITY	TYPE OF SUPPORT
  Butterfly Thyroid Cancer Trust	Thyroid diseases	Financial support for patient/ public education and awareness on disease(s) Financial support for PO's attendance to meeting(s)
  Myeloma UK	Cancer	Financial support for healthcare professional education and awareness on disease(s) Financial support for patient / public education and awareness on disease(s) Non-financial support
  Genetic Interest Group (GIG)	Genetic diseases	Financial support for PO's attendance to meeting(s)
  Gauchers Association Ltd.	Gaucher	Financial support for PO's attendance to meeting(s)
  National Kidney Foundation	Kidney diseases	Financial support for meeting(s) organized by PO
  Leukaemia Care	Cancer	Financial support for patient / public education and awareness on disease(s)
  The Association of Glycogen Storage Diseases (AGSD)	Glycogen Storage Disorders	Financial support for meeting(s) organized by PO General financial support Financial support for PO's attendance to meeting(s) Financial support of patient care related project(s)
  The MPS Society	Mucopolysaccharidoses	Financial support for meeting(s) organized by PO Financial support of patient care related project(s) Financial support for healthcare professional education and awareness on disease(s) Financial support for PO's attendance to meeting(s)
  HEART UK	Cardiac	Financial support for healthcare professional education and awareness on disease(s) Financial support for meeting(s) organized by PO
  Niemann Pick Disease Group	Niemann-Pick	Financial support for patient / public education and awareness on disease(s) Financial support for PO's attendance to meeting(s)
  The Multiple Sclerosis Society UK	Multiple Sclerosis	Financial support for healthcare professional education and awareness on disease(s)
  Thyroid Federation International	Thyroid Cancer	Financial support for PO's attendance to meeting(s)
  Transplant Links	Organ transplant	Financial support for healthcare professional education and awareness on disease(s)

  
  

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