Privacy Policy

In This Article
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    Your privacy is important to us. The following explains our online information practices and the choices you can make about the way your information is collected and used.

    What information do we collect? How do we use it?

    When you enter into a transaction with us (registering for an event, buying a product, making a donation or seeking information), we may need to know specific information in order to process your request.

    Our site’s forms may require you to give us contact information (like your name, e-mail and address). We may use the contact information from these registration and survey forms to send you information about other programs or events of the Hydrocephalus Association. You may opt-out of receiving future mailings. See the choice/opt-out section below.

    When you order products or services from our site, we need to know your name, e-mail address, mailing address, credit card number, and expiration date. This allows us to process and fulfill your order and to notify you of your order status. Please note, your credit card information is not retained by the association in our database. For more details, see the section below about online security and data storage.

    We may use the information we collect to notify you about important changes to the site, new services or features offered by the Hydrocephalus Association, and special offers and information we think you will find valuable. If you would rather not receive this information, please contact us through one of the channels identified in the choice/opt-out section.

    We also collect anonymous, non-identifiable information about visitors. When you visit our site, our server automatically records your domain (service provider), operating system and web browser type/version as well as the time and date of your visit on a particular page. The information automatically recorded by our server is used only for statistical purposes so that we can manage our site and better serve our visitors. Our server does not and cannot record identifiable information, such as your e-mail address.

    How do we protect donor information?

    We will not sell, share or trade our donors’ names or personal information with any other entity, nor send mailings to our donors on behalf of other organizations. 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.


    “Cookies” are small pieces of information that are stored by your browser on your computer’s hard drive. Our site uses cookies to uniquely identify users’ machines so that we can monitor site usage, traffic and trends to serve you better. Cookies also may be used for features such as keeping track of the contents of a shopping cart or helping to deliver more personalized content. Our cookies do not contain any personally identifying information. Most web browsers automatically accept cookies, but you can usually adjust your browser to prevent them. This could limit your ability to use certain features on our site, however.

    Online Security

    When you are asked to provide personal, private and/or financial information (such as a credit card number), we use state-of-the-art security to safeguard your data from entry in a form to storage in our database. The secure server software, SSL (secure sockets layer), encrypts or encodes all information you enter before it is sent to us. Furthermore, all of the customer transactional data we collect is protected against unauthorized access with the use of digital certificates. Digital certificates for the Hydrocephalus Association are issued by GoDaddy, a trusted provider. To learn more about our online security, simply click the “security” icon (usually a padlock) at the bottom of your browser window.

    Data Storage and Management

    Once your information is transferred to the Hydrocephalus Association, the information is stored on secure servers managed by Blackbaud Inc., one of the world’s leading cloud software companies that serves nonprofits , foundations, corporations, education institutions, and healthcare institutions. HA stores information you share with us through membership communications, event registrations, or interest surveys. This can include your contact information and your connection to HA and to hydrocephalus. Examples of where this information is collected include through our WALK to End Hydrocephalus program (both our participant center and mobile app) and our Advocacy program.

    Please note that HA does not retain financial information, such as bank account or credit card numbers, within our database. This information is not transferred over after a payment transaction has been processed.

    Information collected for HAPPIER, our patient-powered registry, is de-identified (meaning the provided information is separated from the identity of the respondent) and stored in secure servers at the University of Utah.

    Information stored in HydroAssist, our mobile app, is stored in its own secure database, unconnected to the main HA constituent database.

    You have the right to be informed of and request access to the personal data we store about you. You have the right to request that we update your data at any time. You also have the right to request that we permanently delete all User Provided data from the database. Please note that after deleting your User Provided data, if you choose to reinstate your relationship with the Hydrocephalus Association, you will need to reenter your data.

    Does the HA disclose the information it collects to third parties?

    While Hydrocephalus Association does not sell, trade, or rent your personal information to others, it may at times, work with reputable third parties (vendors, contractors, etc.) who perform services or marketing on our behalf and may be working with software or technology where our member information is stored. These vendors are under strict contractual guidelines to protect all organizational information.

    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 review those websites' privacy policies and contact the operators of those websites directly if you have any questions about their practices.


    Our site provides users the opportunity to opt-out of receiving communications from the Hydrocephalus Association. To request that you not receive particular communications, please send an email to Please allow up to five business days for your request to be fulfilled.

    Contact Us

    Should you have a question relating to our privacy policy and practices — or wish to review or correct any personal information we may have on file for you — please contact us by:

    Phone:  301-202-3811
    Toll Free:  888-598-3789
    Mail:  Hydrocephalus Association
    4340 East West Highway, Suite 905
    Bethesda, MD  20814

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