Nail Patella Syndrome Worldwide is a federally recognized nonprofit organization dedicated to the support of individuals with Nail Patella Syndrome.

Organization History

With the creation of the Internet, a movement was born. Since the mid-eighties, websites have sprung up on the Internet, created by people with NPS, with the hopes of eventually bringing people with NPS together. With the help of E-Groups, a small community was created, lively discussion flowed, and new concepts were formed. It didn't take this group long to discover that we had knowledge to share, and that, as individuals, we were gaining more information “on the Net”, than we had ever had access to before. It didn't take long before the concept of forming a nonprofit started bouncing around, and for good reason. If we were able to get so much information just by communicating openly with one another, how much more could we get by organizing and actively seeking answers to the questions that were beginning to haunt us all?

In March 2000, the decision was made to actively pursue nonprofit status, and we have been inching forward since that time. In July 2000, interim committee heads were nominated and approved at the convention in Arlington, Texas. Since then, great strides have been made to move this group forward, thanks to the dedication and commitment from a great number of people. In July, 2001 at the convention in Palmdale, California, the first official Board of Directors was voted into office.

The committees within the nonprofit have been hard at work since the Medical Conference held in Palmdale, California, in July of 2001. The revised Medical Brochure will go to print soon, giving people with NPS valuable information for both themselves and their physicians. Nail Patella Syndrome Worldwide also publishes a newsletter and we will be looking forward to quarterly publications in the future. See the links at the bottom of this page to view online versions of the NPSW Newsletter.