This Privacy Policy applies to and Sickle cell disease and or sickle cell trait, owned and operated by This Privacy Policy describes how (“We”, “Us”, “Our”) collects, uses, shares, and secures the personal information you provide. It also describes your choices regarding use, access, and correction of your personal information.

Please note that you are authorized to use this web site only if you agree to this Privacy Statement, and your use of this web site constitutes your acceptance of this Privacy Statement.

Information You Choose to Provide collects personally identifiable information only from our users who choose to provide it. We do so at several different points on our web site, for example:

at the Community sign up

at the Booklets and Brochures By Mail request page

at the subscription point for the email updates

at the online credit card acceptance form

when you contact by email, either to ask questions or to submit your ideas or suggestions

We may use the information you provide to deliver the services you have requested, for example:

if you sign up for our Community and elect to make your email address available to us, we may send you email regarding Community changes or questions about your Discussion Board postings. 

NOTE: Users should be aware that choosing a username that allows personal identification, or disclosing personally identifiable information when posting messages to the Discussion Boards makes the information submitted public. Such disclosure may increase the chance of receiving "spam" or unsolicited email.

if you request free printed booklets, we may use the name and postal mailing address you provide to mail you the booklets you request.

if you provide your email address in connection with an order, we may send you email confirmation of your order.

if you send us a question by email, we may use the email address you provide to respond to your question.

if you elect to add your address to our mailing list, we may send you informational materials and notice of special events at

if you wish to subscribe to our email updates, we will use the email address you provide to send you email updates.

if you purchase a product or other service, we may use the credit card information you provide to bill you for the product or service you have requested.

if you choose to contribute to, we may use the information you provide to process the transaction. We may also mail you updates on our programs and support offerings. You may also receive future solicitations for donations to support these programs and offerings.

The profile you create on our site will be publicly accessible unless otherwise indicated. You may change the privacy settings of your profile through your account portal.

We may also use the information you provide to operate and maintain the web site and to improve our content, services, and communications with you.

If you are visiting our web site from a country outside the United States, you acknowledge and agree that in using this web site, you will transfer personal information about yourself to the United States, that the data protection laws of the United States may not be as comprehensive as those in your own country and that the transfer of this personal information occurs with your consent.

Information Collected Automatically also collects routine tracking information as users move through the site, through the use of IP addresses, cookies, and web beacons, explained in more detail below.

We and our partners use technologies such as cookies or similar technologies to analyze trends, administer the web site, track users' movements around the web site, and to gather demographic information about our user base as a whole. Users can control the use of cookies at the individual browser level.

We use cookies to track aggregate user statistics on the site to help us determine how people move throughout the site, which areas are popular, and which links are unpopular or hard to see. Users can control the use of cookies at the individual browser level. If you reject cookies, you may still use our site, but your ability to use some features or areas of our site may be limited.

Log Files

As is true of most web sites, we gather certain information automatically and store it in log files. This information may include internet protocol (IP) addresses, browser type, internet service provider (ISP), referring/exit pages, operating system, date/time stamp, and clickstream data. We use IP addresses to analyze trends, administer the site, track user's movement, and gather broad demographic information for aggregate use. "IP addresses" are the equivalent of internet "mailing addresses." They tell other computers on the Internet where to send the information you have requested, such as new web pages or images. 

 Disclosure of Information to Third Parties

We will share your personal information with third parties only in the ways that are described in this privacy policy.

We do not rent, sell, or otherwise provide your personally identifiable information to third parties for marketing purposes, without your consent. If you do not want to share your personal information with these companies, contact us here.

We may share your personally identifiable information with our authorized service providers, for example, those who process credit card transactions for us, or handle our email, or support our web site functionality. These companies are authorized to use your personal information only as necessary to provide these services to us.

In certain situations, may be required to disclose personal data in response to lawful requests by public authorities, including to meet law enforcement requirements. We may disclose your personally identifiable information in response to a subpoena, court order, similar legal process or in response to a request from a law enforcement or other government agency, to establish or exercise our legal rights or to defend against claims.

We reserve the right to transfer all personally identifiable information in our possession to a successor organization in the event of a merger, acquisition or a sale of all or a part of our assets. You will be notified via email and/or a prominent notice on our web site of any change in ownership or uses of your personal information, as well as any choices you may have regarding your personal information.

If you opt-in to receive marketing and promotional communications from us or from our sponsors, your identity and contact information (but no medical information) may be used to send you messages about products or services that may be of interest to you. At any time, you can “opt out” of receiving promotional email messages or having your identity and contact information provided to our sponsors, by contacting us at It may take us ten (10) days to process your request. Even after opting out, you may continue to receive email from third parties to whom your address was provided before you opted out. You will be responsible for contacting these third parties directly, to request that they stop sending you promotional email.

We may send you messages regarding your subscription, an order or a contribution by you, or other transactional or relationship messages, without offering you the opportunity to opt out of receiving them.

We may share aggregated demographic information with our partners and sponsors. Partners can include providers of content and services, such as the American Cancer Society, as well as financial sponsors. The aggregate demographic information we share is not linked to any personal information that can identify any individual person.


This web site may contain links to other sites. Please be aware that is not responsible for the privacy practices of such other sites. We encourage our users to be aware when they leave our site and to read the privacy statements of every web site that collects personally identifiable information. This Privacy Statement applies solely to information collected by the web site.


We maintain reasonable and appropriate security procedures and practices to protect the personally identifiable information you provide from unauthorized access, destruction, use, modification and disclosure, and we require that our authorized service providers that have access to your personally identifiable information implement and maintain such security procedures and practices as well. For example, we use industry standard tools such as firewalls to protect your personal information and we host our servers in a physically secure environment and SSL encryption to secure the transmission of your sensitive personal information, such as credit card number or personal health information. Please be aware, however, that email messages sent to a web site may not be secure. Site visitors sending email accept the risk that a third party may intercept email messages. No method of transmission over the Internet, or method of electronic storage, is 100% secure, however. Therefore, we cannot guarantee its absolute security. If you have any questions about security on our web site, you can contact us.

 Correction/Updating Personal Information

Upon request, will provide you with information about whether we hold any of your personal information. If a user's personally identifiable information changes (such as your zip code), or if a user no longer desires our service, the user may review, correct, update, or remove that user's personal data provided to us or request for deactivation for any unauthorized profiles. This can be done by contacting Users will receive a confirmation email stating that we have received their updated or corrected information and/or their request to have personal data removed within a reasonable timeframe.

Retention of Personally Identifiable Information

We will retain your information for as long as your account is active or as needed to provide you services. We will maintain the personally identifiable information that you provide for so long as we, in our sole discretion, believe is necessary or appropriate to carry out the purposes for which the information was collected, or to comply with applicable laws, contracts or other rules or regulations.


Our users are given the opportunity to 'opt-out' of having their information used, at the point where we ask for the information. For example, users who no longer wish to receive our email updates may opt-out of receiving these communications by following the Unsubscribe directions in the update or by contacting us. You may opt out of receiving updates on our programs and support offerings and solicitations for donations to support these programs and offerings by requesting us to remove your mailing address from our list.


The web site is intended for adults. Accordingly, we do not knowingly collect information from children under the age of 13.

Notification of Changes

Users will be notified of any changes in our Privacy Statement by a link to the updated Statement on the home page, including an icon indicating that the Statement has recently changed. Any change will be effective on the effective date that appears on the modified Statement. Your continued use of this Web site following modification of this Privacy Statement will be deemed to signify your acceptance of the modifications. If, at any point, we decide to use personally identifiable information in a manner different from that stated at the time it was collected, we will notify users by way of an e-mail prior to the change becoming effective. Users will have a choice as to whether or not we use their information in this different manner.

 Social Media (Features) and Widgets

Our web site includes social media features, such as the Facebook Like button [and widgets, such as the Share this button or interactive mini-programs that run on our site]. These features may collect your IP address, which page you are visiting on our site, and may set a cookie to enable the feature to function properly. Social media features and widgets are either hosted by a third party or hosted directly on our site. Your interactions with these Features are governed by the privacy policy of the company providing it.


Our web site offers publicly accessible blogs or community forums. You should be aware that any information you provide in these areas may be read, collected, and used by others who access them. To request removal of your personal information from our blog or community forum, contact us. In some cases, we may not be able to remove your personal information, in which case we will let you know if we are unable to do so and why.