Granny, no fear, I just noticed the site you posted and took a look; while there's no definitive answer on its validity I can say, any site requesting money for further information, using a PayPal donation button....well, it quickly loses its "helpful appearance". Not to mention the fact the site used spam tactics to improve its search engine results (probably how you found the site in the first place, a Yahoo or Google search I assume).
While the other link isn't an endorsement or recommendation I do think it provides better information. I can also rest assured that a government site won't sell your personal information (should you submit any) to other organizations or spam-email lists. I suspect this isn't the case with the other website.
I'm not sure about everyone else in this forum, but since posting a few messages around the internet relating to this disease my email inbox has become ABSOLUTELY overwhelmend with junk mail and spam.
I've edited this post and created a new thread about <a href='/forum/showthread.php?t=986'>spam e-mail</a>, specifically disease related spam e-mail <a href='/forum/showthread.php?t=986'>here</a>.