Our Commitment to Privacy
The National Bleeding Disorders Foundation (NBDF) respects the privacy of every individual who visits these NBDF websites: https://hemophilia.org, https://hemaware.org, https://events.hemophilia.org, https://stepsforliving.hemophilia.org, https://victoryforwomen.org, https://betteryouknow.org, https://uniteyourway.org, https://www.pathwaytocures.org, https://hawaiinhf.org, https://idahoblood.org, https://www.nebraskanhf.org, https://hfnv.org, http…, and https://cohemo.org. The Community Voices in Research (CVR) website is not included in the document as it has its own separate research-specific privacy policy. This notice explains our online information practices for these sites, and links are posted conspicuously throughout the websites. By visiting the websites, you accept the practices described in this notice.
Information Collection and Use
NBDF is the sole owner of the information collected on these sites. We will not sell or rent your information. We will not send donor mailings on behalf of other organizations.
NBDF collects data from visitors to the sites via various subscription, donation, contact, registration, and other forms. Completion of any of these forms is optional. Information collected via these forms is entered into the NBDF database. The visitor will be placed on a list to receive NBDF e-mail communications (newsletters, medical advisories, notices of importance to the bleeding disorders community and others), and occasional communications by regular mail. Visitors who do not wish to receive communications from NBDF can opt out at any time. Form completion also allows visitors to register online for specific events, make donations online or offline to NBDF, request information from NBDF’s Information Resource Center.
At no time is a visitor’s personal information shared with any individual, company, sponsor, vendor, organization, or other entity outside of NBDF, except for fulfillment and mailing houses contracted by NBDF for the sole purpose of disseminating NBDF medical, program and promotional materials. Fulfillment or mailing houses are prohibited from sharing and/or selling NBDF’s lists at any time.
NBDF will sometimes conduct voluntary surveys and polls of visitors to the NBDF websites listed above to obtain aggregate demographic information. Such information may be compiled and shared in the aggregate with advertisers/sponsors and other third parties, but no personal details will be traceable or associated with specific individuals.
Except as stated in this privacy policy or at the time of collection, a user’s personally identifiable information will not be transferred to a party outside NBDF. NBDF may disclose account information when we have reason to believe that disclosure is necessary to identify, contact or bring legal action against someone who may be intentionally or unintentionally causing injury to or interference with NBDF’s rights or property, other users, or anyone else that could be harmed by such activities.
Traffic data
Each time a visitor comes to any of the NBDF websites listed above, NBDF counts, tracks and aggregates the visitor’s activity in order to analyze general traffic flow at these sites (where traffic originates, how it flows within NBDF sites, etc.). To these ends, NBDF may merge information about visitors and visits into group data, which may then be shared on an aggregated basis with advertisers/sponsors but will not disclose your individual identity. When NBDF presents aggregated information to outside companies, no one will be able to identify or contact you.
Advertisers/sponsors and Links: Advertisers/sponsors, or websites that have links on the NBDF sites listed above, may also collect personally identifiable information directly from you. The information practices of companies collecting data on websites linked to the NBDF websites listed above are not covered by this privacy policy.
NBDF does not control the privacy policies of our advertisers/sponsors or other sites or businesses to which we provide hyperlinks or access. Please visit the websites of these businesses to review their privacy policies so you will know how those companies use and treat your information.
Users of the NBDF websites listed above should also be aware that personal information disclosed voluntarily in comment or blog areas or bulletin boards may be collected by others and may result in unsolicited messages from others.
Except as stated in this privacy policy or at the time of collection, a user’s personally identifiable information will not be transferred to a party outside NBDF. NBDF may disclose account information when we have reason to believe that disclosure is necessary to identify, contact or bring legal action against someone who may be intentionally or unintentionally causing injury to or interference with NBDF’s rights or property, other users or anyone else that could be harmed by such activities.
Data Security
NBDF has in place physical, electronic, and managerial procedures to protect the information collected online. All NBDF online data collection services are served over HTTPS for enhanced security during submission of data. NBDF's constituent/donor database is secured with 128-bit Secure Sockets Layer / Transport Layer Security (SSL/TLS) encryption, a PCI and industry-standard level of security and privacy for those wishing to conduct secure transactions over the internet. SSL /TLS is used in tandem with a digital certificate generated by VeriSign and GoDaddy. NBDF limits access of its constituent data to key personnel, on a need only basis, to effectively carry out their duties. However, as effective as these measures are, no security system is impenetrable. We cannot guarantee the security of our database, nor can we guarantee that the information you supply will not be intercepted while being transmitted to us over the Internet.
Our Commitment to Children’s Privacy
Protecting the privacy of the very young is important to us. For that reason, we do not maintain information in our constituent database from those we know are under 13.
Website Traffic Data
Each time a visitor comes to any of the NBDF websites listed above, NBDF counts, tracks, and aggregates the visitor’s activity to analyze general traffic flow and engagement at these sites (where traffic originates, how it flows within NBDF sites, what visitors do on web pages, etc.). NBDF’s web analytics platform collects website visitation information that may be associated with Google information from accounts that have consented to this association for the purpose of ads personalization. This information is used to provide aggregated and anonymized insights into our websites’ visitors’ cross device behaviors. NBDF will not disaggregate or merge that information with any personally identifiable information.
NBDF may share on an aggregated basis information about visitors and visits with advertisers/sponsors but will not disclose your individual identity. When NBDF presents aggregated information to outside companies, no one will be able to identify or contact you.
Voluntary Disclosure of Personal Information
Users of the NBDF websites listed above should also be aware that personal information disclosed voluntarily in public comment or blog areas, or bulletin boards may be collected by others and may result in unsolicited messages from others.
Links
Advertisers/sponsors, or other websites or businesses to which the NBDF sites listed above provide hyperlinks, may also collect information directly from you. NBDF is not responsible for privacy practices or information collected on other sites. You are encouraged to read the privacy statements of every website visited.
Use of Cookies
A cookie is a small amount of data that is sent to your browser from a web server and stored on your computer's hard drive. NBDF websites use cookies in a limited way to help deliver information, to identify unique browsers that visit us and to track usage throughout our site. The cookies NBDF uses do not store personally identifiable information nor can they harm your computer.
The information about readership and site usage that NBDF collects through cookies is aggregated into general reports about readership and is not tied to individual identities.
Other companies that place approved advertising on the above listed sites can assign their cookies to you in a process that NBDF does not control. However, cookies cannot be used to identify individuals, only machines, so these advertisers/sponsors will not know who you are.
Social Media Guidelines
NBDF operates and maintains multiple online communication channels, including several accounts on social media platforms. Users are responsible for maintaining the security of their own accounts on these platforms. The ideas and opinions expressed on social media are those of the author and not necessarily aligned with those of NBDF. Content authors on social media are solely and entirely responsible for all activities that occur under their account and will be responsible for any damages caused by their posts.
All users of our social media platforms are expected to maintain a respectful and friendly atmosphere while engaging with others. Comments, posts, and responses must follow the rules of common courtesy, including refraining from using slurs, demeaning language, threats, or personal attacks. We will not tolerate any content that we deem offensive, misleading, potentially harmful, or otherwise unacceptable. We reserve the right to take the following actions at our discretion upon any individual or entity within our public social media platforms: block (ban from access or usage), disengage (not acknowledge or respond to commentary, tagging, etc.), mute (not see certain content within a feed), unfollow (no longer publicly follow an account), hide (hide commentary and responses), or any other action as required and deemed fit by NBDF.
NBDF reserves the right to keep records of posts or comments made on our social media channels. We may share with outside parties engagement and followers' data on an aggregated basis but will not disclose any personally identifiable information unless subject to legal proceedings.
Notification of Changes
This Privacy Policy may be revised and updated at any time at NBDF’s discretion. It is your responsibility to review it and check for any changes. By continuing to use NBDF's websites and social media channels after any changes have been made, you agree to those changes.
Contact NBDF
For more information on our privacy policy, please contact NBDF at communications@hemophilia.org.