Privacy Policy and Confidentiality

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. We do not actively seek donations, however, and we don’t have fundraisers. There may be other groups (by similar names) which do collect donations and have fundraisers, but our group does not wish to require or solicit. We goal is to provide support, information, and raise awareness.

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 atAdministrator
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.

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.