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AAKSIS is aware that mere registration on the website, membership in the
organization. or membership as a contributor to Friends of AAKSIS implies either
a genetic anomaly or a close relationship to people or persons who have such an
anomaly.
The recording of names, addresses, phone numbers, e-mail addresses, karyotype
information, and dates of birth or diagnosis is done to provide the registrant
with newsletters, brochures, announcements, and other information related to
Klinefelter Syndrome. Information is kept confidential.
No directory will be published nor will the registration information ever be
sold or provided to an outside party. Basic information of site registrants is
periodically reviewed by AAKSIS Board members to determine the characteristics
of our audience by age and relationship to XXY individuals for site
modification.
Scientific
Research
AAKSIS supports scientific research into the causes and medical and
developmental complications of XXY.
Should our organization be approached regarding providing subject names for a
scientific survey or study, the proposal will first be studied and then approved
by the AAKSIS professional advisory board.
Once approval is given, AAKSIS will directly notify appropriate registrants of
the possible participation. The subject may then decide whether or not to
participate.
One
should never assume that someone identifying him/herself as a
"researcher" has the approval of AAKSIS or is conducting valid
research.
Links
to Other Websites
This site may contain links or references to other Web sites. Please be aware
that we do not control other sites and that this On-Line Privacy Policy does not
apply to those Web sites. We encourage you to read the Privacy Policy of every
Web site that you visit.
By using and registering on the site, you are confirming that you agree with
this privacy policy. If you do not agree with the privacy policy, please do not
register your name with AAKSIS.
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