The European Gaucher Alliance: A survey of member patient organisations' activities, healthcare environments and concerns

Orphanet Journal of Rare Diseases

Volumn 9, Issue 1, 2014, Pages

  Žnidar, Irena ^a   Collin Histed, Tanya ^a   Niemeyer, Pascal ^a   Parkkinen, Johanna ^a   Lauridsen, Anne Grethe ^a   Zariņa, Sandra ^a   Cohen, Yossi ^a   Manuel, Jeremy ^a  

^a European Gaucher Alliance and Gauchers Association   (United Kingdom)

Author keywords

Enzyme replacement therapy; Gaucher disease; Patient organisations; Rare disease; Substrate reduction therapy

Indexed keywords

ALGLUCERASE; ELIGLUSTAT; IMIGLUCERASE; MIGLUSTAT; TALIGLUCERASE ALFA; VELAGLUCERASE ALFA;

ARTICLE; AWARENESS; CLINICAL DECISION MAKING; ENZYME REPLACEMENT; GAUCHER DISEASE; HEALTH CARE ACCESS; HEALTH CARE FINANCING; HEALTH CARE POLICY; HOME CARE; HUMAN; INFORMATION DISSEMINATION; MEDICAL SOCIETY; MEDICAL SPECIALIST; PATIENT CARE; REIMBURSEMENT; SUPPORT GROUP; EUROPE; HEALTH CARE DELIVERY; HEALTH CARE FACILITY; INFORMATION PROCESSING; PATIENT ADVOCACY; PATIENT SATISFACTION;

DATA COLLECTION; EUROPE; GAUCHER DISEASE; HEALTH FACILITIES; HEALTH SERVICES ACCESSIBILITY; HUMANS; PATIENT ADVOCACY; PATIENT SATISFACTION;

EID: 84908288292     PISSN: None     EISSN: 17501172     Source Type: Journal    
DOI: 10.1186/s13023-014-0134-4     Document Type: Article

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