All content shared on MySickleCellTeam is viewable by all registered members of the MySickleCellTeam community. While we encourage openness and transparency, only share content you are comfortable sharing with those who have signed up for an account on MySickleCellTeam. This social network is password-protected. The only content that search engines such as Google are able to see are anonymized versions of the QA section and anonymized versions of the provider listings.+
MySickleCellTeam is not a medical referral site and does not recommend or endorse any particular Provider or medical treatment. No information on MySickleCellTeam should be construed as medical and/or health advice. MySickleCellTeam is not a “covered entity” for purposes of determining applicability of the Health Insurance Portability and Accountability Act of 1996 and the rules promulgated there under (HIPAA) to the Site and the treatment of User Content (defined in the Terms of Service) provided by you.
Personal Information is information that can be used to identify someone (e.g. name, email address, or potentially username). We will NEVER share your Personal Information with anyone, except in cases involving authorized technical service providers, subpoenas, or illegal activity. You can view those cases here.
MySickleCellTeam may share anonymous trends about the data on our site to make sure real patients have a voice in how treatments for this condition could be shaped. (This will in no way include any personal identifiable information.) We may partner, for example, with a pharmaceutical company developing therapies for sickle cell and share anonymized or aggregated data from MySickleCellTeam that does not identify any of our users.
If you have any questions about our privacy practices, please feel free to contact us at firstname.lastname@example.org.
Information we collect about you
We may collect personal information that can identify you such as your name and email address and other information that does not identify you.
- Information you provide. When you register for the site, we collect and store any personal information you enter on our website or provide to us. This includes identifying information, such as your name, address, e-mail address, and telephone number. We also may request information about your diagnosis, your age, and other demographic information.
- Information about others. We may also collect and store personal information about other people that you provide to us. If you use our website as a caregiver, entering names and locations of people you care for will be listed on our site.
With whom we will share your information
We do not share your personal information with others except as indicated below or when you have expressly consented and requested that we share such information on your behalf. For instance, if you learn of a clinical trial opportunity through MySickleCellTeam and would like to be contacted by a trial site near you, we would only share your contact information with that trial site once you have consented to be contacted and authorized us to share that information. Our default position is that we will not share your personal information.
The only instances we may share personal information is with authorized technical service providers, the event of a subpoena, or an investigation into illegal activity.
- Authorized technical service providers: We may share your personal information with our authorized technical services that perform certain services on our behalf. (Google Analytics, Mail Chimp, etc.) These services may include performing business and sales analysis, supporting our website functionality, and surveys offered through our website. These service providers may have access to personal information needed to perform their functions but are not permitted to share or use such information for any other purposes.
Other Situations: We also may disclose your information:
- In response to a subpoena or similar investigative demand, a court order, or a request for cooperation from a law enforcement or other government agency; to establish or exercise our legal rights; to defend against legal claims; or as otherwise required by law. In such cases, we may raise or waive any legal objection or right available to us.
- When we believe disclosure is appropriate in connection with efforts to investigate, prevent, or take other action regarding illegal activity, suspected fraud or other wrongdoing; to protect and defend the rights, property or safety of our company, our users, our employees, or others; to comply with applicable law or cooperate with law enforcement; or to enforce our website terms and conditions or other agreements or policies.
How we use the information we collect
You have our guarantee that we will NEVER betray your personal health confidences. We believe in transparency, we let our members know exactly what we do or do not do with their information.
+ We may use information that we collect about you to:
What Are Cookies?
The Cookies We Set
When you submit data through a form such as those found on contact pages or comment forms, cookies may be set to remember your user details for future correspondence.
Third Party Cookies
You can also Opt out of Analytics Tracking.
From time to time we test new features and make subtle changes to the way the site is delivered. When we are still testing new features these cookies may be used to ensure that you receive a consistent experience whilst on the site, ensuring we understand which feature changes are preferred by users like you.
You can prevent the setting of cookies by adjusting the settings on your browser (see your browser “Help” section for specific instructions on how to do this). Be aware that disabling cookies will affect the functionality of this and many other websites that you visit. Disabling cookies will usually result in disabling certain functionality and features of this site. Therefore it is recommended that you do not disable cookies.
You can find more information about cookies, including how to see what cookies have been set on your device and how to manage and delete them at www.aboutcookies.org.
How you can access your information
If you have an online account with us, you have the ability to review and update your personal information online by logging into your account. You can also review and update your personal information by contacting us. More information about how to contact us is provided below.
How we protect your personal information
We take appropriate security measures (including physical, electronic and procedural measures) to help safeguard your personal information from unauthorized access and disclosure. For example, only authorized employees are permitted to access personal information, and they may do so only for permitted business functions. In addition, we use firewalls to help prevent unauthorized persons from gaining access to your personal information.
We want you to feel confident using our website to transact business. However, no system can be completely secure. Therefore, although we take steps to secure your information, we do not promise, and you should not expect, that your personal information, searches, or other communications will always remain secure. Users should also take care with how they handle and disclose their personal information and should avoid sending personal information through insecure email. Please refer to the Federal Trade Commission’s website athttp://www.ftc.gov/bcp/menus/consumer/data.shtm for information about how to protect yourself against identity theft.
Posting, Comments, Questions, Recommendations
We provide areas on our websites where you can post information about yourself and others and communicate with others as well as post recommendations of establishments or upload content (e.g. pictures, videos, audio files, etc.). Such postings are governed by our TOS: http://www.MySickleCellTeam.com/about/tos. This site is a password-protected site and your personal content is only visible to those who have signed up for an account. The only content that search engines pick up in an Anonymized version of this QA section.
However, we cannot control who reads your posting or what other users may do with the information you voluntarily post, so we encourage you to exercise discretion and caution with respect to your personal information.
Our website is for those over the age of 18, and we do not knowingly collect personal information from children under the age of 13.
Visiting our websites from outside the United States
No rights of third parties
How to contact us
Privacy Officer, MyHealthTeams
44 Montgomery Street, Suite 770, San Francisco, CA 94104
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