Just so you know

We, several people who have PVNS are working on developing a Research and support organization. I believe I have mentioned it. 
We even have a name now. The PVNS Global Support and Research Institute. We will soon be filing the Articles of Incorporation and will be launching a Web site.
 
As part of that I have done a map using location data gleaned off of the PVNS is pants group Face Book page. It appears that one person feels that I have violated the FB rules by taking that info and mapping it. Seriously if I am doing a map for people on the site who have already posted their location how am I violating the rules?

I changed the  map so that it is not a searchable map unless the URL is given . So that should allay some concern since the main population to reach the map will be via the PVNS is pants page on FB or off of our future web site. 



It never fails that when you attempt to do something that will have a benefit to others there will ALWAYS be someone to try and stop your efforts. Here is the thing with that. . . Thanks but NO you are not stopping us. We are on a mission to spread the word about PVNS and we plan on getting our disease listed with NORD (National Organization of Rare Diseases) and getting our organization up and running. 

With only 1.8/million people out there suffering with this disease it is imperative that there be an organization to gather data on patients and physicians fund research and educate the public. Education is key ! 

We are working hard and my apologies if you are offended and feel your privacy has been violated but YOU were not on the list! Just so you know.