Further information

The following websites may be of interest. Please note that any views expressed on these sites are those of the site originators and are not necessarily endorsed by Actelion:


Patient organisations

Denmark
Sjældne Diagnoser / Rare Disorders Denmark
www.raredisorders.dk
 
France
Vaincre Les Maladies Lysosomales
www.vml-asso.org

Germany
Niemann-Pick Self-help Group
www.niemann-pick.de

Italy
Niemann-Pick Association
www.niemannpick.org

UK
Niemann-Pick Disease Group
www.niemannpick.org.uk

USA
Ara Parseghian Medical Research Foundation
www.parseghian.org

National Niemann-Pick Disease Foundation
www.nnpdf.org


Scientific and medical societies

European Organisation for Rare Diseases (EURORDIS)
www.eurordis.org
 
European Neurological Society (ENS)
www.ensinfo.com

European Study Group on Lysosomal Diseases (ESGLD)
www.esgld.org

Lysosomal Disease Network
www.lysosomaldiseasenetwork.org

Orphanet
www.orpha.net

National Organization for Rare Disorders (NORD)
www.rarediseases.org

Society for the Study of Inborn Errors of Metabolism (SSIEM)
www.ssiem.org

 
 

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