The following services are among those SCA is currently providing or may provide to website visitors, members of the public, patients and families who contact us, donors, those who attend our events, and recipients, those who register at www.sicklecelltx.org (“the Site”), and others.
- provide public information about SCA, including educational resources about SCA
- provide SCA patients and families with insurance, financial, legal, and other resources
- help connect the SCA community through SCA platforms that foster communications and mentoring between SCA patients, families, caregivers and/or researchers who want to interact with others via blogs, forums, or events
- help patients find clinical trials
- help patients find accredited care centers
- conduct surveys of visitors to SCA and potential users of SCA services
- engage in fundraising through avenues including website, email, mail, and other solicitations
- enable individuals to sign up for events, like Camp Cell-A-Bration, Walk for Sickle Cell and other fundraising events
- collect personal information, such as name, address, phone, email address, credit card number/banking information, health information and other descriptive information for those who make donations to SCA
- append or update information about individuals from public or commercially-available sources such as U.S. Postal Change of Address data or local or state government records. We may combine this information with other personal information we have collected.
- communicate with volunteers
Information You Provide to SCA and Your Choices
You are welcome to make use of the educational content on the Site without providing any personal information. However, you may choose to provide us with personal information via the Site. For example, if you choose to register for a SCA account in order to make donations, get involved as a volunteer, attend events, request information, apply for a scholarship, or similar activities, you will need to provide certain personal information such as name, address, telephone number, email address, health information or other descriptive information.
If you choose to use a credit card or PayPal account to make donations or pay to attend events, you will need to submit your credit card or PayPal data through the Site. (If you prefer, you can send a check instead of donating online.)
If you submit your personal information to register, make a donation, volunteer, send us questions and/or otherwise interact with us, we may later send you donation solicitations or follow-up communications related to SCA or SCA-related developments, events, or updates. If you wish to stop these communications, please unsubscribe through our email newsletter or email email@example.com and request removal.
Some of the fundraising sections of our Site make it convenient for you to solicit donations to SCA from your own friends and contacts. If you choose, you can provide name and contact information for your contacts you want to email to ask for donations. SCA (or SCA’s vendor) will retain your friends’ contact information for your convenience for your own future fundraising efforts, but SCA will not seek contact or donations from your contacts unless they actually become donors themselves.
We use personal information about individuals, as well as anonymous, statistical information derived from personal data, to improve, measure, or expand our services and for administrative and operational functions. We will use personal information only for purposes consistent with this Privacy Statement.
Sometimes SCA may wish to share the stories of those within our community publicly in order to help others. Before we share your personal information, however, for this purpose or any other purpose not described in this Privacy Statement, we will obtain your consent.
Special Provisions Related to Fundraising
In addition to what is described elsewhere in this Privacy Statement, SCA has some provisions applicable to personal information connected to fundraising operations. These are:
- SCA does not knowingly contact or solicit donations from individuals under 18 years of age. However, that may be occasionally unavoidable if an outside source gave us information but did not collect or append age information to its lists.
- SCA may collect donors’ personal information such as names, company names, titles, addresses, phone numbers, email addresses, payment information (like credit card data), health information, etc. through online or offline communications.
- SCA uses personal information about donors to respond to inquiries, process donations, issue receipts, help decide who will receive future solicitations, organize fundraising events, assess the effectiveness of SCA fundraising or services, inform donors of new activities and services, and similar activities.
- It is our policy to honor any no-solicitation request as quickly as possible. We are legally required to internally retain records related to donations made, so we cannot delete your name upon request. Instead, we flag records internally so that we can honor no-solicitation requests by suppressing mailings.
Information You Share Through the Site
Our Site may create opportunities for you to share information with others through message boards, blogs, apps, etc. Please remember any information you disclose in these areas becomes public information. Therefore, please exercise discretion in deciding what information to post or share.
Non-Personal Information We Collect
A web beacon is a graphic on a web page or in an email that gathers non-personal web log information about pages visited or emails opened. We use web analytics services, such as Google Analytics, to record non-personal data such as browser type, operating system, the date and time of a visit, where visitors came from, the pages visited on this website, the time spent viewing site, where visitors went when they left the site, and return visits to the site. Please see here to learn more about how Google Analytics collects and processes data and to learn how to opt out of cookies set by Google Analytics.
We may aggregate this non-personally identifiable data to better understand how visitors use our site, and to help manage, maintain, and report on use of our website.
We may store IP addresses for fraud detection and prevention purposes.
Social Plug-In Data
The Site may use interfaces with social media sites like Facebook, Google+, LinkedIn, Twitter, or others. If you chose to “like” or share information from the SCA Site through these services, you should review their privacy policies. If you are a member of a social media site, the interfaces may allow the social media site to connect your Site visit to your personally identifiable information.
Personal Information We May Share
If you provide personal information to us via the Site, we may share it with service providers who assist us in activities such as technology or communications management. These providers are not authorized to use or disclose the information except as necessary to perform services on our behalf or to comply with legal requirements.
We might disclose information about you (i) if required by law, subpoena, court order, or legal process, (ii) to law enforcement or other government authorities, or (iii) if we believe disclosure is necessary or appropriate to prevent serious physical harm or in connection with an investigation of or legal action involving illegal or fraudulent activity or conduct that violates our site terms.
Protecting Personal Information
We are committed to maintaining the security of personal information. Although it is not possible to guarantee that security measures employed will be fully sufficient to protect personal information, we use appropriate administrative, technical, and physical security measures intended to protect against loss, misuse, improper access, disclosure, alteration, or destruction of personal information. These measures may include encrypting data-in-transit (via TLS), encrypting data-at-rest, obfuscation of password information, use of intrusion detection/prevention systems, tokenization of credit card numbers, and restrictions on the access to personal information to those SCA personnel with a need to know. If we share personal information with third parties to provide services to us, we will contractually require them to employ appropriate security measures to protect it.
If you register with SCA for any services that require a username and password, we encourage you to take strong precautions to protect these credentials. While we strive to protect your personal information, we cannot ensure or warrant the security of any information you transmit to us or receive from us. This is especially true for information you transmit to us via email. We review our data security arrangements regularly.
Links to Other Sites
We may provide links to other websites for your convenience and information, but we do not operate these websites and are not responsible for their privacy practices or content. Please contact those websites directly if you have any questions about their practices.
This Site is intended for use by adults. If you are between the ages of 13 and 18 years old, you may use this Site only if: (i) your use has been approved by your parent or legal guardian, (ii) you use the Site under his or her supervision, and (iii) he or she has agreed to the Terms (and any additional registration agreements, if applicable) on your behalf.
If you are the parent of a minor, you may use the Site and agree to the Terms on behalf of the minor. By doing so, you warrant that you have the legal capacity to act on the minor’s behalf and you agree that the provisions of the Terms (and any additional registration agreements, if applicable) that are applicable to you are equally applicable to the minor.
Changes to This Notice
We may update this Privacy Statement at any time and, if so, we will post the new policy on this page immediately.