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Privacy & Social Media Statements

The following are basic guidelines that are in place to ensure a civil, respectful discussion that add to the richness of the HFA publications and communications dialogue.

This privacy statement discloses the privacy practices for HEMOPHILIA FEDERATION OF AMERICA (HFA) for those persons who utilize any HFA publications and communications including but not limited to the following:

  • HFA Websites
  • Facebook
  • Twitter
  • Online Community
  • Blood Brotherhood Forum
  • Other (Emerging)
  • Surveys
  • Mobile Applications
  • Educational Symposium
  • Fundraising Events
  • Voices Stories Campaign

HFA is dedicated to protecting your privacy and ensuring your ability to use our publications and communications with confidence.

Information Collection and Usage

Submission of personal information on HFA publications and communications and is optional. Users can visit the publications and communications without revealing any information about themselves. HFA is the sole owner of the information collected in its publications and communications. HFA will not sell, share, or rent this information to others in ways different from what is disclosed in this statement. HFA collects information from our users at several different points on its publications and communications. If one chooses to provide personal information for the purposes of correspondence, or registration for an HFA event, program or service and the like, this privacy statement discloses our use of that information and your consent thereto by use of the HFA publications and communications.

Cookies

This site makes use of Internet Technology known as “cookies”. A cookie is a small data file that can contain information such as a user identification that the site uses to track the pages you have visited. However, the only personal information a cookie can contain is that which you supply. Any material or information which you supply, transmit or post on its publications and communications, by any means, will be treated as non-confidential and non-proprietary, with the exception of Credit Card information which is transmitted via encrypted methods to protect privacy. Credit Card information remains confidential and is never stored in cookies.

The HFA publications and communications contain registration forms which require users to provide contact information, such as name and email address, and demographic information, such as address and zip code. HFA uses this registration and contact information to send the HFA publications and communications in furtherance of the HFA mission and vision statements. This information you supply is used as part of the HFA database and mailing list.

If you do not wish to be included on the HFA database and mailing list, you will have the opportunity to designate such on the forms you submit online to HFA. Users may opt-out of receiving future contact, publications, mailings and other communications from HFA at any time by notifying the HFA headquarters via the contact information contained on the HFA its publications and communications.

Outside Links

HFA publications and communications contain links to other such forms of communication. HFA is not responsible for any information posted on any of these other forms of communication and HFA is not responsible for the privacy practices of others. Once one leaves HFA publications and communications it is strongly advised that the privacy statements of those outside resources be read prior to using. The HFA privacy statement applies solely to its publications and communications.

Notification of Changes

Any changes to the HFA privacy statement HFA collection and use of information policy will be disclosed on this Privacy Statement page. HFA will use information in accordance with the Privacy Statement in effect at the time the information was collected.

User Agreement

The use and viewing of the HFA publications and communications constitutes an agreement that you accept the provisions of this HFA privacy statement and agree to abide by all of the terms and conditions contained herein. If you do not agree with the terms and conditions of this HFA Privacy Statement, you are not authorized to use or view the HFA publications and communications.

HFA Social Media / Online Community Guidelines

The Hemophilia Federation of America (HFA) is delighted to provide and maintain our social media sites and blogs as set forth in the beginning of this privacy statement. HFA operates and maintains its social networking sites as a community service to share information about issues, events, HFA programs and services that pertain to the bleeding disorders community.

The material provided in HFA Publications, Social Media and Online Communities/Forums as well as all of its publications and communications is provided for general purposes only.

The ideas, opinions, views and actions shared in comments on HFA's Social Media sites are those of the author and do not necessarily reflect the policies or positions of HFA. HFA encourages those in the bleeding disorders community to discuss/interact/share with each other in a respectful way.

Moderation & Privacy Notice

HFA social media including “social forums” are moderated. Every contribution submitted to HFA social forums will be checked by HFA for compliance with our content standards as soon as reasonably practicable after it is published. However, HFA is under no obligation to you or any other person to oversee, monitor or moderate any social media or social forums we provide on our site, and we may stop moderating at any time.

Access to HFA social media or social forums by authorized HFA administrative staff, legal counsel and authorized professionals for review, enforcement of rules or maintenance of sites is conducted pursuant to a signed Privacy & Non-Disclosure Agreement and/or who are bound by their particular rules of their profession or law which mandate protection of privacy.

We reserve the right to remove, or to disable access to, any postings which we deem to be potentially defamatory of any person or which we deem unlawful or in violation of any third party rights. We expressly exclude our liability for any loss or damage arising from the use of HFA social media or social forums by any person in contravention of these Rules.

Please consider these guidelines before commenting/posting on HFA social media sites/blogs:

  • Be Respectful. Think before you post. It is ok to disagree but please keep your comments appropriate.
  • No Soliciting or Advertising. HFA's social media sites are for community members to connect and share and there shall be no unapproved advertising or soliciting of business, advertising or otherwise allowed on these sites.
  • Protect Your Privacy. Comments made on any of HFA's social media sites are visible to the general public. Protect yourself by not providing any personal information that you do not want public.

HFA's goal is to provide a comfortable, safe online environment where people with various backgrounds, viewpoints, and experiences can interact. HFA staff moderates HFA's social media sites and blogs. At all times, HFA reserves, in its sole and final discretion, the right to remove any comments/posts/links which are unrelated, inappropriate, of poor taste or for whatever reason HFA decides.

The user agrees to abide by all copyright and trademark rules and laws applicable to the use of the HFA publications and communications and other media incorporated or used herein.

Surveys

Your responses to surveys will be kept STRICTLY CONFIDENTIAL. The information that identifies you will not be shared with anyone except the administrators. The information we report will not contain any identifying information about you.

Mobile Applications

HFA does not utilize GPS to track the actual location of HFA app users. GPS will only be used to measure the absolute distance between two reported locations and only when the user requests this to be tracked. This feature, if selected by the user, might be used to track the total distance exercised during a specific exercise event, for example.

Medical Disclaimer

HFA does not give medical advice or engage in the practice of medicine and recommends that you consult with your physician or local treatment center before beginning any form of treatment.

Copyright

All information and content in HFA's publications and communications are protected by copyright. All rights are reserved.

Users are prohibited from modifying, copying, distributing, transmitting, displaying, publishing, selling, licensing, creating derivative works, or using any information available on or through the site for commercial or public purposes.

For limited permission to reprint articles or other HFA material or content: info@hemophiliafed.org

Last Revised 11-20-2012

Assisting and Advocating for the Bleeding Disorders Community