This year is the National Niemann-Pick Disease Foundation's 20th year of providing services to families affected by Niemann-Pick Disease, raising awareness, and the crucial part of funding for research.
This special occasion will be held in Nashville, Tennessee on August 16-19th! More details will develop here in the upcoming future on “the skinny”.
Twenty years ago, there wasn't much of anything to really help support families living and receiving the diagnosis of Niemann-Pick Disease. The information was scarce to say the least. Now looking forward, there is a wide range of available information that will help point families in the right direction.
Although there is no FDA approved cure or effective treatment at this time, having the support and a better understanding to what this disease causes for families does help in some way although the outcome is grim. Currently there are 400+ families including all three types of Niemann-Pick A, B, C that are apart of the disease community that benefit from the NNPDF's comprehensive collection of information.
The Niemann-Pick Children's Fund helps spread awareness, raise money for research, and provide an additional arm of support for families but also leverages existing channels to help give it a team effort. More Information
