Here is some information about the international community of Niemann-Pick Disease (copied from the NNPDF):
While the NNPDF and CCNNPDF work diligently to extend support to any and all families that reach out and contact us, there are times where distance and language do become a barrier in supporting NPD family needs. For this, we are very grateful to have the International Niemann-Pick Disease Alliance, which helps us to bridge such gaps. The INPDA states that the group is an, "International response to a group of diseases that present challenges that cross all national boundries."
INPDA Members during the 2013 Family Support and Medical Conference