The National Hemophilia Foundation (NHF) respects the privacy of every individual who visits these NHF websites: https://hemophilia.orghttps://hemaware.orghttps://stepsforliving.hemophilia.orghttps://victoryforwomen.orghttps://betteryouknow.orghttps://redtiecampaign.org and The My Bleeding Disorders Community (MyBDC) 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

NHF is the sole owner of the information collected on this site. We will not sell your information. We will not send donor mailings on behalf of other organizations.

NHF collects data from visitors to the site via various registration forms. Completion of any of these forms is optional. Information collected via the form is entered into the NHF database. The visitor will be placed on a list to receive NHF e-mail communications (NHF Notes, medical advisories, notices of importance to the bleeding disorders community and others), as well as occasional communications by regular mail. Visitors who do not wish to receive communications from NHF have the opportunity to opt out at any time. Form completion also allows visitors to register online for specific events, make donations online or offline to NHF.

At no time is a visitors’ personal information shared with any individual, company, sponsor, vendor, organization or other entity outside of NHF, except for fulfillment and mailing houses contracted by NHF for the sole purpose of disseminating NHF medical, program and promotional materials.  Fulfillment or mailing houses are prohibited from sharing and/or selling NHF’s lists at any time.

Traffic data

Each time a visitor comes to any of the NHF websites listed above, NHF 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 NHF sites, etc.). To these ends, NHF 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 NHF 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 NHF sites listed above, may also collect personally identifiable information directly from you. The information practices of companies collecting data on websites linked to the NHF websites listed above are not covered by this privacy policy. 

NHF 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 NHF 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 NHF.  NHF 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 NHF’s rights or property, other users or anyone else that could be harmed by such activities.


NHF’s websites listed above may include links to other online resources. NHF is not responsible for the privacy practices or information on other sites. You are encouraged to read the privacy statements of every website visited.

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 on our Web site from those we actually know are under 13.

Data Security

NHF has in place physical, electronic and managerial procedures to protect the information collected online. All NHF online data collection services are served over HTTPS for enhanced security during submission of data. NHF's constituent/donor database (Softerware DonorPerfect) 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. NHF limits access of its constituent data to key personnel, on a needs 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.

In order to delete your data, please contact the National Hemophilia Foundation at 212.328.3700. Note some of your data may still be stored on third party sites. 

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. NHF 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 NHF uses do not store personally identifiable information nor can they harm your computer.

The information about readership and site usage that NHF 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 have the ability to assign their cookies to you in a process that NHF does not control. However, cookies cannot be used to identify individuals, only machines, so these advertisers/sponsors will not know who you are.

Surveys and Polls 

NHF will, from time to time, conduct voluntary surveys and polls of visitors to the NHF 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.


Contact Us 

If you have any questions about our policies or compliance, or to request removal of your information, you may call 212-328-3700, or write to:

7 Penn Plaza

Suite 1204

New York, NY 10001


Note that some of your data may be stored on databases of third parties.