This website is owned and operated by and on behalf of the Sickle Cell Disease Association of America, Inc. (SCDAA). We recognize that visitors to our site may be concerned about the information they provide to us, and how we treat that information. This Privacy Policy addresses those concerns. This policy may be changed or updated from time to time.

If you have questions about our Privacy Policy, you can contact us at:

Sickle Cell Disease Association of America, Inc.
3700 Koppers St. #570
Baltimore, MD 21227

Or email us at

We are available to answer your questions or hear your concerns.

The Sickle Cell Disease Association of America, Inc.’s Official Privacy Policy

SCDAA values its relationship with patients, families and supporters. We are careful to protect that relationship by respecting your privacy and the information you share with us.

Our privacy policy is explained below. This policy was last reviewed January 2019. If you have any questions or comments, please contact us at the phone number and email mentioned above.

About Our Information-Gathering Practices

We never give, sell or rent our mailing lists. Regardless of whether you contact us by phone, email, or register at our website, your name will not be shared with others outside of SCDAA and its authorized agents. Exceptions to this policy include your approval or request to share your information, legal processes, or when we believe that disclosure is necessary to protect you or our rights as required by law. This includes, but is not limited to, mailing addresses, telephone or fax numbers, and email addresses.

This policy applies to all information received by SCDAA, both online and offline, on any Platform (“Platform”, includes the SCDAA website and mobile applications), as well as any electronic, written, or oral communications.

To the extent any donations are processed through a third-party service provider, our donors’ information will only be used for purposes necessary to process the donation.

We collect an Internet Protocol (IP) address from all visitors to our site.

An IP address is a number that is automatically assigned to your computer when you use the Internet. We use IP addresses to help diagnose problems with our server, administer our site, analyze trends, track users’ movement, gather broad demographic information for aggregate use in order for us to improve the site, and deliver customized, personalized content.

Our website may use cookies to enhance your site experience.

Cookies are pieces of information that some websites transfer to the computer that is browsing that website and are used for record-keeping purposes at many websites. Use of cookies makes Web-surfing easier by performing certain functions such as saving your passwords, your personal preferences regarding your use of the particular website and to make sure you don’t see the same ad repeatedly. Many consider the use of cookies to be an industry standard.

Your browser is probably set to accept cookies. However, if you would prefer not to receive cookies, you can alter the configuration of your browser to refuse cookies. If you choose to have your browser refuse cookies, it is possible that some areas of our site will not function properly when you view them.

How we use your contact information.

We use your contact information to send you updates about SCDAA’s activities, research news, fundraising information, and notification of sickle cell disease-related events and information that may be of interest to you. At any time you may choose not to receive these mailings. Instructions for stopping email notices are included in each of our messages or you can call us at (800)421-8453, and we will promptly honor your request. Registered users of our website and any one contacting SCDAA offline are able to opt-out of these mailings at the time they register, and can change that choice online at any time. They may also contact SCDAA directly to opt-out of any mailings.

Donations made online through our website using our Donation Form and other forms transmitted through our website are secure.

Donations to SCDAA are transmitted using SSL (Secure Socket Layer) encryption. SSL is a proven coding system that lets your browser automatically encrypt, or scramble, data before you send it to us. We also protect account information by placing it on a secure portion of our website that is only accessible by certain qualified employees of SCDAA. Unfortunately, however, no data transmission over the Internet is 100 percent secure. While we strive to protect your information, we cannot ensure or warrant the security of such information.

Do not send personal information via email.

“Email” by its very nature is not secure. Please do not send us any personal information in your email that you would be uncomfortable sharing with others. Know that email can be intercepted and that a copy of your message may be stored on the computer you are using.

The electronic messages you receive from us may include “Tell-A-Friend” options. If a user elects to use our referral service for informing a friend about our site, we do not collect or save the friend’s name or email address.

How to correct, update or verify your contact information.

To correct, update, or verify your contact information, or if you wish to stop receiving information from SCDAA, please call us at (800)421-8453 or email us at  We will promptly honor your request.

About the links and resources at our site.

Several sections of our site link to other places on the Internet. We believe the information or services at these sites are of significant interest to individuals living with sickle cell disease and their family members, caregivers, healthcare professionals and other supporters of our community. If you have concerns about their privacy policies or questions about their security, please contact those providers directly. We do not assume responsibility for the practices or content of any website which links to, or from, our site.

We reserve the right, at our sole discretion, to change, modify, add, or delete portions of this policy at any time without further notice. If we do this, we will post the changes to this privacy policy on our website and will indicate the date these terms were last revised. Your continued use of our site after any such changes constitutes your acceptance of the new policy. It is your responsibility to regularly check to determine if there have been changes to these terms and to review such changes.

Regarding the Use of Our Site by Children Under 13

We encourage our young visitors to spend time online supervised by a parent or guardian.

Our site is intended for adults. Because you can visit our site without disclosing any personal information, we do not know when a child is viewing our site. Like any web site, we offer email ability into our office and links to other sites. We encourage parents to speak with their children about the personal information they share online and privacy issues involving use of the Internet.

Protecting the privacy of the very young is especially important. For that reason, we adhere to the 1998 Children’s Online Privacy Protection Act (COPPA). (For more information, visit the Federal Trade Commission’s COPPA site at