As a Father of a daughter with a rare disease, I can't begin to describe how important NORD has been to our family. When Gaby was diagnosed in 2006 we had no where to turn with a condition that affects 1 in 2 Million. Until we found NORD! NORD is the mother ship for all us very small rare disorders like APS Type 1. When we were first introduced and got involved they were critical to providing a wealth of information about the condition...providing us with contacts that assisted us in creating our own website, and supporting us with fundraising through their restricted research grant program. So far we have 3 research projects through NORD and our working on our 4th. If you've had trouble with connectivity with NORD...I recommend contacting them again, I'm confident that the people I've interacted with are very interested in each and every one of us living day to day with the challenges of rare disorders.