National Patient Organizations

In 2008, 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
  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

  
  

• BELGIUM

  PATIENT ORGANIZATION	DISEASE COMMUNITY	TYPE OF SUPPORT
  Fenier-Fabir	Kidney diseases	General financial support
  Belgische Oranisatie voor Kinderen en volwassenen met een stofwisselingsziekte (Boks)	Metabolic diseases	Financial support for meeting(s) organized by PO
  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	Multiple Sclerosis	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 for meeting(s) organized by 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 of Public Relations activities of PO
  Асоциация на Пациентите с Онкологични Заболявания и приятели	Cancer	Financial support for meeting(s) organized by PO

  
  

• CROATIA

  PATIENT ORGANIZATION	DISEASE COMMUNITY	TYPE OF SUPPORT
  Zajednica udruga dijaliziranih i transplantiranih bubrežnih bolesnika Hrvatske	Kidney diseases	Financial support for patient/ public education and awareness on disease(s) Financial support for meeting(s) organized by PO
  Hrvatska udruga bolesnika s rijetkim bolestima	Rare diseases	Financial support for patient/ public education and awareness on disease(s)
  Društvo distrofičara Istre	Neuromuscular diseases	Financial support for patient/ public education and awareness on disease(s)
  Udruga distroficara, invalida cerebralne i djecje paralize i ostalih tjelesnih invalida Slavonski Brod	Neuromuscular diseases	Financial support for patient/ public education and awareness on disease(s)

  
  

• CZECH REPUBLIC

  PATIENT ORGANIZATION	DISEASE COMMUNITY	TYPE OF SUPPORT
  Sdružení META – sdružení pacientů se střádavými onemocněními, o. s.	Metabolic diseases	Financial support for patient/ public education and awareness on disease(s) Financial support for meeting(s) organized by PO

  
  

• DENMARK

  PATIENT ORGANIZATION	DISEASE COMMUNITY	TYPE OF SUPPORT
  Gaucher Foreningen	Gaucher	General financial support Financial support for PO's attendance to meeting(s) Financial support for patient/ public education and awareness on disease(s)
  Foreninge for sjældne sygdomem og diagnoser.	Rare diseases	Financial support for patient/ public education and awareness on disease(s)
  Fabryforeningen	Fabry	Financial support for patient/ public education and awareness on disease(s)
  Nyreforeningen	Kidney diseases	Financial support for meeting(s) organized by PO Financial support for patient/ public education and awareness on disease(s)

  
  

• FINLAND

  PATIENT ORGANIZATION	DISEASE COMMUNITY	TYPE OF SUPPORT
  Suomen Fabry Yhdistys	Fabry	Financial support for meeting(s) organized by PO Financial support for patient/ public education and awareness on disease(s)

  
  

• FRANCE

  PATIENT ORGANIZATION	DISEASE COMMUNITY	TYPE OF SUPPORT
  Ligue Rein et Santé (LRS)	Kidney diseases	General financial support
  Fédération Nationale d'Aide aux Insuffisants Rénaux (FNAIR)	Kidney diseases	Financial support for meeting(s) organized by PO Financial support for patient/ public education and awareness on disease(s)
  TRANS-FORME	Kidney diseases	General financial support 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	General financial support Financial support for meeting(s) organized by PO
  Association de Patients de la Maladie de Fabry (APMF)	Fabry	General financial support
  Vaincre les Maladies Lysosomales (VML)	Lysosomal Storage Disorders	Financial support for patient/ public education and awareness on disease(s)
  Association des Familles d'Enfants Atteints de Leucémies et de Tumeurs (AFLET)	Cancer	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
  Gaucher Gesellschaft Deutschland e.V.	Gaucher	General financial support Non-financial support
  SHG Glukogenose Deutschland e.V.	Pompe	Financial support of Public Relations activities of PO
  MPS-Gesellschaft e.V.	Mucopolysaccharidoses	Financial support for meeting(s) organized by PO
  ArthroseLiga e.V.	Arthritic	General financial support Non-financial support
  Bundesverband der Organtransplantierten e.V. Hamburg	Organ transplant	Financial support of Public Relations activities of PO
  Deutsche Leukämie-Forschungshilfe Aktion für krebskranke Kinder e.V.	Cancer	Financial support of Public Relations activities of PO
  DLH Deutsche Leukämie- und Lymphomhilfe e.V. Bonn	Cancer	General financial support
  Histiozytosehilfe e.V.	Cancer	Financial support for meeting(s) organized by PO
  Leukämie Rhein-Main e.V.	Cancer	Financial support of Public Relations activities of PO
  Landesverband Nierenkranker, Dialysepatienten und Transplantierter Niedersachsen e.V.	Kidney diseases	General financial support
  Dialyseverein Köln & Leverkusen	Kidney diseases	General financial support
  Interessengemeinschaft der Dialysepatienten und Nierentransplantierter in Bayern e.V.	Kidney diseases	General financial support
  Bundesverband Niere e.V.	Kidney diseases	General financial support
  Deutsche Gesellschaft zur Bekämpfung von Fettstoffwechselstörungen und ihren Folgeerkrankungen DGFF (Lipid-Liga) e.V.	Metabolic diseases	Financial support of Public Relations activities of PO Financial support for patient / public education and awareness on disease(s)

  
  

• GREECE

  PATIENT ORGANIZATION	DISEASE COMMUNITY	TYPE OF SUPPORT
  Πανελλήνια Ένωση Σπανίων Παθήσεων (ΠΕΣΠΑ)	Rare diseases	Financial support for patient/ public education and awareness on disease(s)
  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 Σύνδεσμος Νεφροπαθών	Kidney diseases	Financial support for meeting(s) organized by PO
  Πανελλήνιος Σύλλογος 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 diseases	General financial support
  Mukopoliszacharidózis Társaság	Mucopolysaccharidoses	Financial support for meeting(s) organized by PO
  Vesebetegek Országos Szövetsége	Kidney diseases	General financial support

  
  

• ISRAEL

  PATIENT ORGANIZATION	DISEASE COMMUNITY	TYPE OF SUPPORT
  עמותת חולי כליות ומושתלים	Kidney diseases	Financial support for meeting(s) organized by PO General financial support
  עמותת אנזים	Pompe	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 PO's attendance to meeting(s)
  העמותה לזכויות החולה	All Patients	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)	Thyroïd diseases	General financial support
  Associazione Regione Lazio degli Ammalati di Tumore della Tiroide ed Associati (ATTA Lazio)	Thyroïd diseases	General financial support
  Associazione Italiana Basedowiani e Tiroidei (AIBAT)	Thyroïd diseases	General financial support
  Associazione Italiana Gaucher (AIG) - Onlus	Gaucher	General financial support
  Associazione Italiana Pazienti Anderson-Fabry (AIPAF)	Fabry	General financial support
  Gruppo Italiano Pazienti Fabry (GIPF)	Fabry	General financial support
  Associazione Italiana Mucopolisaccaridosi e Malattie affini (AIMPS)	Mucopolysaccharidoses	General financial support Indirect financial support
  Associazione Italiana Sindrome dell'"X-fragile" (FRAXA)	Genetic diseases	Indirect financial support
  Associazione Italiana Niemann-Pick	Niemann-Pick	General financial support
  Comitato "Maria Letizia Verga" per lo studio e la cura della leucemia del bambino	Cancer	Financial support of patient care related project(s)

  
  

• THE NETHERLANDS

  PATIENT ORGANIZATION	DISEASE COMMUNITY	TYPE OF SUPPORT
  Stichting Fondsenwerving Nierpatientenvereniging	Kidney diseases	Financial support for meeting(s) organized by PO
  Diavaria	Kidney diseases	Financial support for meeting(s) organized by PO
  Nierpatientenvereniging Rijnmond	Kidney diseases	Financial support of patient care related project(s)
  Gaucher Vereniging Nederland	Gaucher	Financial support for meeting(s) organized by PO Financial support of patient care related project(s) Financial support for PO's attendance to meeting(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	Metabolic diseases	General financial support Financial support of patient care related project(s)

  
  

• NORWAY

  PATIENT ORGANIZATION	DISEASE COMMUNITY	TYPE OF SUPPORT
  FH Patientforeningen Norge	Familial Hypercholesterolemia	General financial support Financial support for PO's attendance to meeting(s)
  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 PO's attendance to meeting(s)
  Stowarzyszenie Rodzin z Chorobą Fabry'ego	Fabry	Financial support for PO's attendance to meeting(s) Financial support for meeting(s) organized by PO

  
  

• 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

  
  

• ROMANIA

  PATIENT ORGANIZATION	DISEASE COMMUNITY	TYPE OF SUPPORT
  Alianta Nationala pentru Boli Rare	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)
  Национальная Ассоциация организаций больных редкими заболеваниями «Генетика»	Rare diseases	Financial support for PO's attendance to meeting(s) Financial support for meeting(s) organized by PO Non-financial support Financial support for patient/ public education and awareness on disease(s) Financial support for healthcare professional education and awareness on disease(s)
  Общество 'Хантер-синдром'	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)

  
  

• SERBIA

  PATIENT ORGANIZATION	DISEASE COMMUNITY	TYPE OF SUPPORT
  савез организациjа бубрежних инвалида Републике Србиjе	Kidney diseases	General financial support

  
  

• SLOVENIA

  PATIENT ORGANIZATION	DISEASE COMMUNITY	TYPE OF SUPPORT
  Drustvo za pomoc pri obolenjih ščitnice Metuljcica	Thyroïd diseases	Financial support for patient/ public education and awareness on disease(s)
  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 Catalana de Enfermedades Neuromusculares (ASEM)	Neuromuscular diseases	Financial support for meeting(s) organized by PO
  Asociación Española de Enfermos de Glucogenosis (AEEG)	Glycogen Storage Disorders	Financial support for meeting(s) organized by PO
  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
  Federación Española de Enfermedades Raras (FEDER)	Rare diseases	Financial support for patient/ public education and awareness on disease(s)
  Grupo SIFU	All Patients	Financial support for patient/ public education and awareness on disease(s)
  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 Hipercolesterolemia Familiar	Familial Hypercholesterolemia	Financial support for disease research Financial support for meeting(s) organized by PO
  Fundación Renal ALCER España	Kidney diseases	Financial support for patient/ public education and awareness on disease(s) Financial support of patient care related project(s) Financial support for meeting(s) organized by PO
  Asociación Iberoamericana contra el Cáncer de Tiroides (AICCAT)	Cancer	Financial support for meeting(s) organized by PO

  
  

• SWEDEN

  PATIENT ORGANIZATION	DISEASE COMMUNITY	TYPE OF SUPPORT
  MPS Föreningen	Mucopolysaccharidoses	General financial support
  Komitee for Barneveckan i Örebro	Lysosomal Storage Disorders	Financial support for patient/ public education and awareness on disease(s)
  Patientföreningen för Farbryssjuka i Sverige	Fabry	Financial support for meeting(s) organized by PO Financial support for PO's attendance to meeting(s)
  Njurförbundet	Kidney diseases	General financial support

  
  

• 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	Kidney diseases	Financial support for patient/ public education and awareness on disease(s)

  
  

• UKRAINE

  PATIENT ORGANIZATION	DISEASE COMMUNITY	TYPE OF SUPPORT
  Всеукраїнська громадська організація "Об"єднання інвалідів-хворих на хворобу Гоше"	Gaucher	Financial support for PO's attendance to meeting(s) General financial support
  Всеукраїнська громадська організація "Об’єднання інвалідів-хворих на мукополісахаридоз"	Mucopolysaccharidoses	Financial support for PO's attendance to meeting(s)

  
  

• UNITED KINGDOM

  PATIENT ORGANIZATION	DISEASE COMMUNITY	TYPE OF SUPPORT
  Butterfly Thyroid Cancer Trust	Cancer	Financial support for patient/ public education and awareness on disease(s) General financial support Financial support for PO's attendance to meeting(s)
  Myeloma UK	Cancer	Non-financial support
  Genetic Interest Group (GIG)	Genetic diseases	General financial support
  Jeans for Genes	Genetic diseases	Financial support for patient/ public education and awareness on disease(s)
  National Kidney Foundation	Kidney diseases	Financial support for meeting(s) organized by PO
  Cymdeithas Cleifion Arennau Cymru	Kidney diseases	Financial support for meeting(s) organized by PO
  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)
  The MPS Society	Mucopolysaccharidoses	General financial support Financial support for meeting(s) organized by PO Financial support of patient care related project(s)
  HEART UK	Familial Hypercholesterolemia	Financial support for healthcare professional education and awareness on disease(s) Financial support for meeting(s) organized by PO

  
  

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