Our Commitment to Privacy
and Confidentiality:
The Pheochromocytoma Organization respects the privacy of every
individual
who visits www.pheochromocytoma.org (“Web site”). This notice explains
our online information practices. Because your privacy is important to
us,
we provide you with notice and choices about the collection and use of
your
information. To make this notice easy to find, links are provided at the
bottom of our homepage and on every page within our Web site.
Additionally,
each page that requests personally identifiable information reminds you
of
the importance of your privacy and provides a link to the privacy
policy.
By visiting www.pheochromocytoma.org, you accept the practices described
in this Privacy Notice.
Use of Cookies:
We use cookies, small files that are sent to your Web browser and stored
on your computer's hard drive, to improve your Web site experience. The
cookie
is used to speed up your access to the Web site and the information you
wish
to see, but it does not contain any personal information. The majority
of
Web browsers accept cookies, but the “help” menu on your browser
should give you options for preventing, accepting, or receiving notice
of
new cookies. However, please be aware that if you block cookies, some
Web
site functionality may be lost.
Data Collection:
We collect two types of information -
Standard Web server traffic pattern information. General traffic, site
usage,
and length of stay information is collected and stored in log files.
This
type of information is shared externally only on an aggregated basis.
Personal information. We do
not collect personally identifiable information
from you unless you provide it to us voluntarily and knowingly. If you
personalize a Web site, volunteer, request information, or donate, for
example,
we may collect the following information: first and last name, street
address,
city, state, zip code, telephone number, email address, and subject of
inquiry.
Personal information may be needed for certain optional online
activities:
Registration: If you choose
to customize the Web site to your needs by becoming
a registered www.pheochromocytoma.org Web user, we retain the
preferences
you select so that you will not have to reenter the information each
time
you access our Web site. These preferences may include requests for
email,
news, information on specific illness types, language preferences, and
interest
group selections (patient, medical professional, volunteer). You are not
required to enter your name or mailing address.
If you register to
participate in a Pheochromocytoma Organization event,
such as meetings, using our event registration site, we may ask you if
you
are an endocrine cancer survivor. This information is useful for event
purposes.
Further, if you elect to use our referral service to inform a friend
about
the event registration site, we will ask you for your friend's name and
address.
We will store this information in order to send your friend a one-time
email
inviting him or her to visit the site.
Contributions: If you choose
to donate to our organization, we maintain a
record of your contribution.
Requests: If you submit an
online request for free brochures, or submit a
question through a “contact us” query, we may have to gather additional
information from you to respond to your request. Such information will
vary
with the request but often includes name, shipping address, telephone
number,
and email address.
Public Forums: If you choose
to participate in a chat room, discussion board,
news group or another public forum that we make available to our users,
please
remember that any information that you disclose in these areas becomes
public
information. You should exercise caution when deciding whether or not to
disclose your personal information.
Data Use:
We limit the use of information provided to us on our Web site to the
following:
Internal Use:
If you do not make a service request, donation, purchase, or otherwise
identify
yourself, we will have no personally identifiable information about you.
We will only use aggregate information derived, in part, from your use
of
our site to improve our site and our service to you.
If you provide personal
information, we may enter your name into our constituent
database and contact you in order to:
Complete voluntary surveys seeking feedback for quality and service
improvement
purposes.
Supply you with information including endocrine cancer related health
news,
events and services.
We collect the email addresses of those who communicate with us by
email.
Inquiries may be forwarded to the appropriate organization contact for
response
and may be entered into our constituent database. If your name is
entered
into the database, we may contact you.
External Use:
Your health-related information is privileged and confidential and will
not
be shared or released to any organization or business entity other than
those
affiliated with or working in conjunction with Pheochromocytoma
Organization
as follows:
We use third parties to provide you with the following services:
Clinical Trials: If you are
considering clinical trial participation and
you request a trial referral from Pheochromocytoma Organization, we will
share your information with each other as part of the matching process.
Pheochromocytoma Organization will then contact you to discuss the
details
or provide further information.
Your Options:
We respect your privacy and allow you to restrict internal and external
sharing
of your personal information. We recognize that you may wish to limit
the
ways in which we contact you and we offer the following options:
Do not contact me by telephone.
Do not contact me by postal mail.
Do not contact me by email.
Do not share my contact information with other organizations.
Do not contact me with fundraising requests supporting the
Pheochromocytoma
Organization.
Do not contact me or share my information with anyone.
Access:
Upon request, we will provide you with the contact information we
maintain
about you so that you may request corrections. This information will be
sent
via postal mail, which we believe is the most secure method of
communication.
Please contact us by email at
admin@pheochromocytoma.org
To protect your privacy and security, we will take reasonable steps to
verify
your identity before providing information or making corrections.
Data Security:
We are committed to protecting the security of your personal information
and to honoring your choices for its intended use. To prevent
unauthorized
access, maintain data accuracy, and ensure the correct use of
information,
we strive to maintain physical, electronic, and administrative
safeguards.
Links Within Our Web
Site:
Internal Links
Because of the various programs at Pheochromocytoma Organization, there
are
several privacy notices to inform our constituents of policies specific
to
the activity in which they are participating. We do not allow
advertising
or spamming.
External Links
Our privacy policies apply only to your use of our Web site. This site
contains
links to other sites, including sites that have a special relationship
with
us. We do not disclose personably identifiable information to those
operating
linked sites and we are not responsible for their privacy practices.
Links
to other sites do not imply an endorsement of the materials or policies
on
those Web sites. You should read the privacy policies of each site you
visit
to determine what information that site may be collecting about you.
Contact Us:
This privacy statement will be updated periodically and posted on our
Web
site. It applies only to our online practices and does not encompass
other
areas of the organization. We reserve the right to change this policy at
any time by posting revisions. You agree to review the Privacy Policies
each
time you use our Web site so that you are aware of any modifications. By
accessing or using the Web site, you agree to be bound by all of the
terms
and conditions of the Pheochromocytoma Organization Privacy Policy as
posted
at the time of your access or use. If you have any questions about our
policy
or our compliance, you may send us an email at
admin@pheochromocytoma.org
Policy Updates:
We reserve the right to update this policy at any time. If a material
change
is made to the policy, we will email all registered users at the email
address
provided at time of registration.
