We can do very little to fight Niemann Pick C disease. However, we can be there for Mael and make his very special life as wonderful as possible, and keep him as active as possible with a variety of therapies. Unfortunately, that means we will have to rely in the future on resources and therapies that are not covered entirely by insurance. And participating in international research projects or consultations will result in travel expenses.
We have therefore set up a foundation for Mael and other people with rare diseases called MAELS LEBEN (Mael’s Life). The foundation’s purpose is to provide assistance, advice, companionship, and support to people with rare diseases and their families in Switzerland, especially with Niemann-Pick C disease. The foundation is intended not only to support Mael, but also to offer financial support for specific resources, travel expenses, therapies, and other targeted assistance for people with rare diseases. People in need of financial help can contact us via email. Please write us for what you need specific help.
Account information for donations to the MAELS LEBEN Foundation
Verein MAELS LEBEN
IBAN: CH16 8116 8000 0038 8092 5
A bank wire transfer order is available here in pdf format.
Direct help specifically for Mael
We are working hard to fill Mael’s life with very special experiences. Anyone who wants to give him a wonderful experience or grant him a special wish is welcome to contact us. We’re open to any ideas.
Donating to NPSuisse (Swiss Niemann Pick association)
If you want to help in the fight against Niemann-Pick C disease, you can also become a member of our NPSuisse association or make a one-time donation. NPSuisse works to advise, support, and assist people who are directly or indirectly affected by Niemann-Pick disease, and also represents the interests of those affected and their families. It also advocates for concerns related to rare diseases in general.
Thanks you so much to everyone who supports Mael and is there for him in any way. We appreciate every little bit of help! Because alone we would never be able to walk this uncertain and difficult path.