NOAH AOC

this is a call to anyone with HPS. Well I just want to meet another person with it except for my brother so if anyone has HPS please do not hesitate to post to this thread. And ladies don't be shy to holla back, paz

Hey Mati, I also have HPS. So does my brother. Actually, there's a group of us that have a yahoo group if you're interested. I moderate that group. You can e-mail me at: hkdawn@yahoo.com.

Do you know about the HPS Network? We also have a conference once a year in New York. It's a blast, and you can meet lots of fellow HPS'ers there!

 I know about the conference but always to broke to go or even save up enough to go, maybe this year will be different.  I never seen another HPS person before, well outside the family except a friend of mine.  i'll take a look at the yahoo group, but i'm a little shy so we'll see.

Hi,

I have HPS. I only meet 1 person with HPS and she passed away. I would also like to meet other people.

Nicky

 I have met a few alibnos but only one with HPS also, it's interestingto meet a lot of people but scary at the same time

hi mati

my name is sarah im from ireland my two sons we have just been told they have hermanski is there any way possible you would be able to tell me anything about this syndrome over here doctors havent came across it and havent a clue what they are dealing with i myself have OA but i havent tested for hsp i look forward to hearing from you

                                                          sarah

Dear Sarah,

My name is Heather and I have HPS type 1. I am also the Vice President and Director of Outreach for the HPS Network. I don't know if you've been in touch with the Network, although I know everyone is in Las Vegas right now. (And they were all in Florida doing an outreach the week before.) If you haven't been in touch, or if no one has gotten back to you, please e-mail me at hkdawn@yahoo.com. First, lets make sure the correct diagnostic testing was performed. Second, I'm sure you're quite worried and in need of information. We can answer your questions and hopefully, get you and your physicians set up with anything you need. We also have a listserv for parents of children with HPS. That might also be of interest to you. Let me know.