Rare diseases can be easily compared to icebergs. During their life very few human beings ever come up against icebergs and even less have ever seen a real one. However almost all human beings have heard about icebergs, red something or seen photos. We hope that same could happen for rare diseases and that people can become more aware of them as well. In our Niemann Pick case the iceberg in question is a particular one floating together with approx. 7000 others. Like all of these icebergs ours has a hidden part under the water that you cannot see. You can only imagine.

The common understanding of Niemann Pick disease and of rare diseases in general is limited to the top of the iceberg. The part you cannot see: the daily problems, the fear, the helplessness, the isolation, the uncertainty, the hope, the fight with the administration and the jurisdiction, all are under the sea in the depth of the ocean.

The iceberg is a natural phenomenon. So is Niemann Pick disease. This means that this is not only a problem to be tackled by physicians. It will need the skills and energy of a lot of different people. NPSuisse is willing to help by raising awareness, helping patient have access to efficient therapies and by supporting scientific and clinical research in spite of the limited economical resources available.

NPSuisse will tow this iceberg, and in so doing help others, to warmer waters with the aim of melting it.

Christoph Poincilit, President of NPSuisse