PO Box 4214
Morgantown, West Virginia 26504
Phone 304-212-2616
Contact
PO Box 4214
Morgantown, West Virginia 26504
Phone 304-212-2616
Contact

Community Voices in Research

Community Voices in Research

Community Voices in Research (formerly MyBDC) connects the experiences of people with bleeding disorders and their family members to researchers investigating improving treatments and care.

How does it work?

As a participant in NHF’s Community Voices in Research (CVR), you complete surveys about your experiences living with a bleeding disorder. Researchers seeking to better understand specific aspects of living with a bleeding disorder may submit targeted surveys that you can choose to complete. Surveys through research studies offer compensation for completion. All information will be reported in a de-identified, aggregate manner to protect your privacy. Your personal identified information will never be sold or shared. For more information, please read the CVR privacy policy.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Resource Link

PO Box 4214
Morgantown, West Virginia 26504
Phone 304-212-2616
Contact
Privacy Policy

Privacy Policy

  1. What Information Do We Collect? When you visit our website you may provide us with two types of information: personal information you knowingly choose to disclose that is collected on an individual basis and website use information collected on an aggregate basis as you and others browse our website.
  2. Personal Information You Choose to Provide We may request that you voluntarily supply us with personal information, including your email address, postal address, home or work telephone number and other personal information for such purposes as correspondence, placing an order, requesting an estimate, or participating in online surveys. If you choose to correspond with us through email, we may retain the content of your email messages together with your email address and our responses. We provide the same protections for these electronic communications that we employ in the maintenance of information received by mail and telephone.
  3. Website Use Information Similar to other websites, our site may utilize a standard technology called "cookies" (see explanation below, "What Are Cookies?") and web server logs to collect information about how our website is used. Information gathered through cookies and server logs may include the date and time of visits, the pages viewed, time spent at our website, and the sites visited just before and just after ours. This information is collected on an aggregate basis. None of this information is associated with you as an individual.
  4. How Do We Use the Information That You Provide to Us? Broadly speaking, we use personal information for purposes of administering our business activities, providing service and support and making available other products and services to our customers and prospective customers. Occasionally, we may also use the information we collect to notify you about important changes to our website, new services and special offers we think you will find valuable. The lists used to send you product and service offers are developed and managed under our traditional standards designed to safeguard the security and privacy of all personal information provided by our users. You may at any time to notify us of your desire not to receive these offers.
  5. What Are Cookies? Cookies are a feature of web browser software that allows web servers to recognize the computer used to access a website. Cookies are small pieces of data that are stored by a user's web browser on the user's hard drive. Cookies can remember what information a user accesses on one web page to simplify subsequent interactions with that website by the same user or to use the information to streamline the user's transactions on related web pages. This makes it easier for a user to move from web page to web page and to complete commercial transactions over the Internet. Cookies should make your online experience easier and more personalized.
  6. How Do We Use Information Collected From Cookies? We use website browser software tools such as cookies and web server logs to gather information about our website users' browsing activities, in order to constantly improve our website and better serve our users. This information assists us to design and arrange our web pages in the most user-friendly manner and to continually improve our website to better meet the needs of our users and prospective users. Cookies help us collect important business and technical statistics. The information in the cookies lets us trace the paths followed by users to our website as they move from one page to another. Web server logs allow us to count how many people visit our website and evaluate our website's visitor capacity. We do not use these technologies to capture your individual email address or any personally identifying information about you.
  7. Notice of New Services and Changes Occasionally, we may use the information we collect to notify you about important changes to our website, new services and special offers we think you will find valuable. As a user of our website, you will be given the opportunity to notify us of your desire not to receive these offers by clicking on a response box when you receive such an offer or by sending us an email request.
  8. How Do We Secure Information Transmissions? When you send confidential personal information to us on our website, a secure server software which we have licensed encrypts all information you input before it is sent to us. The information is scrambled en route and decoded once it reaches our website. Other email that you may send to us may not be secure unless we advise you that security measures will be in place prior to your transmitting the information. For that reason, we ask that you do not send confidential information such as Social Security, credit card, or account numbers to us through an unsecured email.
  9. How Do We Protect Your Information? Information Security -- We utilize encryption/security software to safeguard the confidentiality of personal information we collect from unauthorized access or disclosure and accidental loss, alteration or destruction. Evaluation of Information Protection Practices -- Periodically, our operations and business practices are reviewed for compliance with organization policies and procedures governing the security, confidentiality and quality of our information. Employee Access, Training and Expectations -- Our organization values, ethical standards, policies and practices are committed to the protection of user information. In general, our business practices limit employee access to confidential information, and limit the use and disclosure of such information to authorized persons, processes and transactions.
  10. How Can You Access and Correct Your Information? You may request access to all your personally identifiable information that we collect online and maintain in our database by emailing us using the contact form provided to you within the site structure of our website.
  11. Do We Disclose Information to Outside Parties? We may provide aggregate information about our customers, sales, website traffic patterns and related website information to our affiliates or reputable third parties, but this information will not include personally identifying data, except as otherwise provided in this privacy policy.
  12. What About Legally Compelled Disclosure of Information? We may disclose information when legally compelled to do so, in other words, when we, in good faith, believe that the law requires it or for the protection of our legal rights.
  13. Permission to Use of Materials The right to download and store or output the materials in our website is granted for the user's personal use only, and materials may not be reproduced in any edited form. Any other reproduction, transmission, performance, display or editing of these materials by any means mechanical or electronic without our express written permission is strictly prohibited. Users wishing to obtain permission to reprint or reproduce any materials appearing on this site may contact us directly.
Terms & Conditions

Terms & Conditions

Donation Refund Policy

We are grateful for your donation and support of our organization. If you have made an error in making your donation or change your mind about contributing to our organization please contact us. Refunds are returned using the original method of payment. If you made your donation by credit card, your refund will be credited to that same credit card.

Automated Recurring Donation Cancellation

Ongoing support is important to enabling projects to continue their work, so we encourage donors to continue to contribute to projects over time. But if you must cancel your recurring donation, please notify us.
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  • NHF Privacy Policy

    Our Commitment to Privacy
    The National Hemophilia Foundation (NHF) respects the privacy of every individual who visits our Web sites, including hemaware.org and hemophilia.org. This notice explains our online information practices, and links to it 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 to others outside of NHF. 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 and join NHF or renew membership.
    At no time is 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.

    Traffic data
    Each time a visitor comes to an NHF website, we count, track and aggregate the visitor’s activity into our analysis of general traffic flow at our sites (where traffic originates, how it flows within NHF sites, etc.). To these ends, we may merge information about visitors and visits into group data, which may then be shared on an aggregated basis with our advertisers/sponsors, but we will not disclose your individual identity. When we do present 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 our site, may also collect personally identifiable information directly from you. The information practices of companies collecting data on our site or websites linked to hemophilia.org are not covered by this privacy policy.
    We do not control the privacy policies of our advertisers/sponsors or other sites or businesses to which we provide hyperlinks or access. Please visit the sites of these businesses to review their privacy policies.
    Hemophilia.org users 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 also 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 hemophilia.org users or anyone else that could be harmed by such activities.

    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 and utilize a 128-bit SSL encryption for enhanced security during submission of data. NHF's constituent/donor database (Blackbaud Sphere) is a PCI DSS and PA-DSS compliant product. They process payments protected by state-of-the art security measures, such as redundant firewalls, authentication services and an encrypted SQL database unreachable by any public IP address. 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.

    Links
    NHF’s websites include links to other online resources. NHF is not responsible for the privacy practices or information on other sites. We encourage our visitors to read the privacy statements of every website they visit.

    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. We 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 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 advertising on our site 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 hemophilia.org 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.

  • NHF Medical Disclaimer

    The information contained on the NHF web site is provided for your general information only. NHF does not give medical advice or engage in the practice of medicine. NHF under no circumstances recommends particular treatment for specific individuals and in all cases recommends that you consult your physician or local treatment center before pursuing any course of treatment.

    All information and content on this web site 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.

© West Virginia Chapter National Hemophilia Foundation 2023

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