Last Updated: January 7, 2020
BPAN WARRIORS is committed to safeguarding your privacy and personal data. As a nonprofit organization, BPAN Warriors operates with a single, urgent goal — to speed a cure for BPAN. BPAN Warriors uses the donations it receives to fund scientific research in furtherance of that goal. BPAN Warriors also offers digital and non-digital tools for patients, families, donors and researchers to access information on BPAN and to engage with the community.
What Data We Collect
Personal information, including name, email address, mailing address and personal connection to BPAN.
Platform data, including your IP address, browsing actions and traffic patterns, which is automatically collected through cookies and other tracking technologies as you navigate our website. Our website and other digital platforms also include third-party features and widgets (e.g., social sharing) that may collect data.
Transactional data, including personal and credit card information, through secure purchases or donations submitted on our financial transaction pages. This information is used to acknowledge receipt of your donation for tax purposes and to include you on BPAN Warriors’ mailing list, if you choose to join it. When you send a donation in honor or in memory of someone and request that an acknowledgement be sent to another individual, we will use the name and address of that individual for acknowledgement purposes only.
How We Use Your Data
BPAN Warriors and its third-party vendors may use your personal, platform or transactional data to:
Provide you with relevant information about our programs and services
Carry out a request or transaction you have initiated
Responding to your questions, emails, or other inquiries or requests Analyze trends in user behavior
Optimize the performance of our website and develop new services
Tailor and promote opportunities for engagement to meet your interests
Improve the technical performance and personalized experience of our website
For any other purposes with your consent
Personal Information We Share
BPAN Warriors does not sell or rent your information to others through the website, except as described below:
Subsidiaries and Affiliates. We may share personal information with our subsidiaries and affiliates for the purposes for which you provided the information or as reasonably necessary for our internal administrative and business purposes.
Service Providers. We work with third parties that provide services on our behalf. Such services may include website hosting, marketing, data analysis, infrastructure provision, IT services, customer service, email delivery services, and website usage analytics. We may share personal information with these third parties for the purpose of enabling them to provide these services.
Google Analytics. We will use Google Analytics to gather statistics on users of the website. We will use the information gathered to improve web services. According to Google, Google Analytics employs cookies to define user sessions, which allows for the collection of important data about how users use the website. Google Analytics uses only first-party cookies for data analysis. This means that the cookies are linked to the website’s website domain(s), and Google Analytics will only use that cookie data for statistical analysis related to your browsing behavior through the website. According to Google, the data collected cannot be altered or retrieved by services from other domains. If you choose, you can opt out by turning off cookies in the preferences settings in your browser. For more information on Google Analytics, please visit Google’s web website.
Google Maps. This website also allows users to access Google Maps, which includes a geolocation feature. The geolocation feature may be used to track information about your location. According to Google, the first time you use the geolocation feature on Google Maps, you will be asked to confirm that you wish to share your location with Google Maps, and you can always undo your decision. For more information on Google Maps, please visit Google’s web website.
Third Party Payment Processors. If you make donations through the website, we may share personal information with third parties who process payments on our behalf. BPAN Warriors is not responsible for the conduct of any third parties who process payments on our behalf, and we expressly disclaim all liability for damages of any kind arising out of the action or inaction of such third parties.
Consent. We may share personal information in accordance with any consent you provide.
Donor Lists. If you make a donation through the website, we may include your name in our list of donors on the website.
BPAN Warriors and BPAN Team Pages. If you create a BPAN “Warriors” or BPAN “Team” page on the website, any information you provide on the Warrior or Team page will be automatically posted to the website. This information may include your name, photographs, videos, and any other information you voluntarily provide.
Your information may also be disclosed to comply with a court order, law or legal process.
If you wish, you can modify your internet browser settings to alter which technologies are permitted, but this may limit some functionalities and features of our website.
Information Storage and Data Security
We care about the security of your transactions and the data you share on our website. BPAN Warriors employs reasonable security precautions to protect personal information about you. The website is operated from a secure environment with integrated security measures to help protect against the loss, misuse, and alteration of personal information provided through the website. These security measures include Secure Socket Layer (SSL) technology data transmission. You should be aware, however, that "perfect security" does not exist on the Internet, and third parties may unlawfully intercept or access transmissions or private communications.
As a result, although we strive to protect personal information about you, we cannot guarantee the security of any information you transmit to us through or in connection with the website. If you have reason to believe that personal information is no longer secure, please notify us immediately by contacting us in accordance with the last section below.
None of the content and information on BPAN Warriors’ website is targeted toward children under 13 years of age. We make every effort possible to ensure that we do not collect or maintain information on our website from those we know to be younger than 16 unless parental consent has been obtained in writing.
BPAN Warrior and Team Pages
The website provides users the opportunity to upload information through BPAN “Warrior” and BPAN “Team” pages. Any information that you choose to upload through a Warrior or Team page will become public information. This information may include your name, photographs, videos, and any other information you voluntarily provide. You are solely responsible for any such information you choose to upload to the website, and you can always choose whether or not to provide information through a Warrior or Team page. All information that is uploaded through a Warrior or Team page may be viewed by other users of the website and the general public (for example, through the use of Internet search engines or other Internet applications). Because information that may be uploaded through Warrior and Team pages may consist of sensitive health information, we urge you to carefully consider whether or not to upload such information, keeping in mind that once uploaded, this information may be viewed by any member of the public.
BPAN Warriors provides an online form to join our communications list. If you have “opted-in” to receive communications, we may send you regular communications, either via e-mail or regular mail.
You will be added to the BPAN Warriors’ email list only if you register to receive emails via a form or checkbox on The BPAN Warriors’ website or email correspondence. If at any time you decide that you no longer wish to receive notices from us regarding the website or you would like to correct or change the personal information you have provided, please contact us at firstname.lastname@example.org or send a letter via U.S. mail to:
350 NE 28th Road
Boca Raton, Florida 33431
To protect your privacy and security and the identity of BPAN Warriors’ donors and community members, we will take certain steps to verify your identity before granting access to your information or making corrections. You will be asked specific questions, including full name, address, phone number, and, if applicable, credit card numbers and/or expiration date.
Special Admonitions for International Use
The owner of the website is based in the State of Florida in the United States. Access to the website may not be legal by certain persons or in certain countries. If you access the website from outside the United States, you do so on your own initiative and are responsible for compliance with local laws. If you are located outside the United States and you contact us or provide information through the website, please be advised that any information you provide to us will be transferred to the United States, and that by submitting information, you explicitly authorize such transfer.
350 NE 28th Road
Boca Raton, Florida 33431
Links to Other Websites
BPAN Warriors' website includes links, some temporary and some permanent, to other websites. We are not responsible for the privacy and security practices of any other website or the nature of the content contained therein.