privacy

[Joe]

The HER2 Support Group share your concerns about privacy. It is ironic because just yesterday we applied for certification under the HonCode program. One of the principles of this program is confidentiality.

We have and always will protect the privacy of everyone who visits this web site, which is the reason why this forum is free ond open to everyone and does not require prior registration.

To be perfectly honest, you can use any name that you want on this board, but the only thing we ask is that you remain consistent.

The Group also maintains a database of users who have volunteered to provide us with their personal information. Again, the only information which is actually required is a valid email address, any other information is strictly voluntary.

Under no circumstances will we sell,rent, share or provide any member information with anyone. We respect the privacy of all our members.

Warmest Regards
Joe
Webmaster

[Lolly]

I understand the privacy concerns of those who have jobs to maintain and insurance coverage contingent upon their job situation. It's more than unfortunate that there exists the potential for discrimination violations. I am retired since my diagnosis, so don't have that concern.
I live in a fairly small community which is very supportive of people with disabilities, whether permanent or temporary. I feel extremely fortunate to be able to be completely open about my disease and treatment, and in this way hope to educate and inspire others. It's a small way of giving something back after being helped so much by others in our time of need.
I would hope that a newly diagnosed and scared individual would see a post of mine on GOOGLE or another search engine and be given hope by my story.
If there are privacy concerns, one can do as Joe suggests and use an alias, and then comfortable participating freely. Hopefully someday we won't have to worry about these things when we're faced with life and death.
Love, Lolly
Love, Lolly

[AlaskaAngel]

I was surprised by this just recently too. By pure chance I have used a moniker other than my name for posting.

I'm sure most people who post are unaware of this. Most posts are efforts to share information that helps us all to understand how to deal with the disease. But I find it disconcerting because support groups are places where we also come to be able to talk about things that can be very intimate, as part of dealing with the disease.

A.A.

[Anonymous]

I was surprised that when I did a search on google that one of my posts on this board came up. I would like to help other surviors but feel uncomfortable now sharing my sensitive medical information on the web to just anybody.

[anonymous]

I don't blame you. What a shock.It hadn't occured to me, but now I think of it I suppose it should have.

[Steph N]

Hi -
I just put into a Google search my screen name on this site and got over 5,600 "matching sites." A few pages into the matches, up came two of my posts. But, ONLY two from a couple of months ago or more. Might get more with some specific topic, but figure they would be so buried that I hardly matters.
That puts my mind at ease about this and I will continue to post as usual.

[al from Canada]

why worry about 2 posts?
Al