NPSuisse is the Association of Niemann-Pick patients living in Switzerland. The Association was created in January 2011 in Unterägeri (Canton Zug). NPSuisse is managed by parents, relatives and friends of Niemann-Pick patients .
Our objectives
NPSuisse wants to support, inform and attend people who are directly or indirectly affected by the Niemann Pick disease. Important to NPSuisse is to represent the interests of individuals and families outside the NP community. For this purpose NPSuisse is also involved with rare diseases in general and our website is maintained accordingly.
Differences to other associations
NPSuisse, the main association of patients affected by the Niemann-Pick disease in Switzerland, has developed its activities mainly in the R&D support and politics. In 2012 the Oetterli family has created the association “Mael's Life” in order to specifically assist children and adolescents (Mael was 19 months old when NP-C was diagnosed in 2009) who are suffering under a rare disease and whose families are facing the same kind of destiny. “Maels Leben” is not a separate but an additional entity to NPSuisse. Matthias Oetterli is member of both boards. Mael and his whole family belong to NPSuisse. The Oetterli family is very much involved in sharing information according to the destiny of Mael.
Medical information
Medical information on this website is intended to support the relationship between patients and physicians and not to replace it. Information on this site is maintained by Matthias Oetterli (journalist BR and father of an NPC patient) and collected from following sources:
- Orphanet - The portal for rare diseases and Orphan Drugs
- Niemann-Pick-c.com (Actelion)
- Genetics Home Reference (U.S. National Library of Medicine, Dep. of Health and Human Services)
- University of Notre Dame (Indiana, USA)
Information is checked by Dr. med . Marianne Rohrbach, Department of Metabolic Diseases, University Children's Hospital Zurich (CH).
Disclaimer
The content of our website has been drawn up with the greatest of care. NPSuisse cannot be held responsible or liable for the accuracy, completeness or up-to-dateness of the information provided. It also does not accept any liability for loss or damage of any kind arising from use of this website. The medical information published on our website is for information purposes only and should not be understood as endorsing self-medication or self-therapy. Furthermore, it does not substitute in any way medical examinations, therapies or treatments by qualified medical specialists. External links are clearly identified as such. The operators of the linked websites bear sole responsibility for the content thereof.
Website Financing
This website has been set up under the financing of the Swiss Niemann-Pick Association. The operative functionality of this page is supported by the Webberry Company in Lucerne. The layout and contents have been produced by NPSuisse members. This website has not and will not be supported by any advertising activities. NPSuisse offers no commercial place for advertising on its site.
 |
We comply with the code HON.