Last Modified: October 15, 2018
The American ACNES Foundation (the “Foundation”) values your trust, and we understand the importance of protecting your privacy. We want to make sure that you understand how your information is collected and used by the Foundation. This privacy policy (“Privacy Statement”) describes what information we collect about you, including when and how we collect it; how we use it; with whom we may share it; and what choices you have regarding our use of your information.
This Privacy Statement applies to all information collected through your communications with the Foundation, whether electronic, written or oral; information collected through Foundation mobile applications (“Apps”) or Foundation websites (“Sites”) that include a link to this Privacy Statement; as well as any other information about you that we may collect offline or receive from third-parties (collectively, Apps, Sites, and offline or third-party information are referred to as the “Services”). By accessing our Services or providing your information to us, you accept and agree to the practices described in this Privacy Statement.
What types of personal information we collect about you
When you engage with the Foundation or visit or use our Services, we collect a variety of information. In general, the type and amount of information we collect on you will depend on how you choose to interact with the Foundation. The Foundation collects information that identifies you as an individual or information which is linked or linkable to you as an individual, which will collectively be referred to throughout this Privacy Statement as “Personal Information”: including, but not limited to, contact information, demographic information, health and financial information, as well as call recordings and transcripts.
Contact Information and Preferences. We may request contact information such as your name, mailing address, telephone number, e-mail address, and your preferences for how you would like to be contacted by the Foundation.
Demographic Information. We may request limited demographic information such as your gender, race or ethnicity, marital status, geographic location and/or primary language.
Health Information. We may request limited health information about you such as your relationship to ACNES or, if applicable, your type of ACNES, date of diagnosis, stage, or current treatment. For instance, this information may be needed to assist you if you contact the Foundation seeking ACNES information. If you register to participate in a Foundation event, we may ask you about your relationship to ACNES so that we can let you know about special activities for caregivers and survivors. This health information may be transmitted electronically for the uses and/or disclosures described in this Privacy Statement.
Financial Information. If you make a donation to the Foundation or make a retail purchase on a Foundation Site, we will collect payment information such as your credit card number to process your transaction. We may use a third-party payment service to process payments made through the Services. We will retain your credit card information only for as long as necessary to process the transaction.
Call Recordings and Chat Transcripts. If you contact the Foundation for information or assistance by calling our National ACNES Information Center or online via the “Contact Us” chat feature, we may record your call or maintain a transcript of the chat for training and quality assurance purposes. The information contained in these transcripts will depend on what you voluntarily provide to the Foundation.
How we collect personal information about you
The Foundation and its service providers may collect Personal Information in a variety of instances. For example, we may collect information about you in the following circumstances:
Site and App Use. We may collect Personal Information through your use of the Sites and Apps, including the Foundation’s online public forums, discussion boards, or chat rooms. If you become a registered user of a Site or App, we will collect login and profile information and may also collect information about your areas of interest. Please note that any information you post within these public forums will become public and may be read, collected, and used by anyone. Please exercise caution when deciding whether to disclose your Personal Information in public forums.
Donations. If you make a donation to the Foundation, we will collect Personal Information from you that may include: your name, address, telephone number, and/or e-mail address so that we can send you a receipt and thank you for your donation. We may also collect limited financial information to process your donations.
Volunteer Participation. If you seek employment with the Foundation or volunteer for the Foundation, we will collect information related to your role. For instance, we will collect employment history information if you submit a resume to the Foundation. If you are volunteering to provide peer-to-peer support for ACNES patients, we may ask about the languages you speak.
Research Participation. If you inquire about (or enroll in) a Foundation research study, we may collect information from you related to the study or studies, which may include health information. Research participant data is maintained in a secure, restricted environment and is accessed only for research purposes.
Event Registration. If you register to participate in a Foundation event we may also ask about your relationship to ACNES, but you are not required to provide this information to participate in Foundation events.
Health Provider, Health Plan or Caregiver Referral. Your healthcare provider or health plan may put you in touch with the Foundation if they believe we have information or resources that can assist you with your care or ACNES journey. If you are referred to the Foundation through a healthcare provider or health plan, we will receive contact and demographic information, as well as limited health information from the healthcare provider or health plan.
Third-party Fundraising Campaigns, Promotions or Events. We may use or interact with third-parties to conduct fundraising campaigns, promotions or events, including online platforms such as Crowdrise or PledgeIt. In these instances, we may receive access to donor reports which includes donor name, contact information and donation amount. We also may receive your Personal Information if you respond to a cause-related marketing campaign or other promotion benefitting the Foundation that is conducted by a corporate partner.
Social Media Interfaces. If you elect to connect your social media account to your Site account, certain Personal Information from your social media account will be shared with us, which may include Personal Information that is part of your profile or your friends’ profiles; in addition, if you log-in to our website using your social media account, use a “like” button or use other social media features while visiting our website, those social media companies may collect information about you. Your interactions with social media companies and the use of their features are governed by their privacy policies.
Other Sources. We may receive your Personal Information from other sources, including third-party organizations we collaborate with to provide support services and information to ACNES patients and their caregivers; or supplemental data sources to supplement or link the information we collect from you.
How we may use your personal information
We and our service providers may use Personal Information for the following purposes:
Mission Delivery and Support Operations. We will use your Personal Information to respond to your inquiries and to provide you with the information, resources and support services you request. We may use your Personal Information to help us better understand the individuals we serve, to better communicate with you, and to better serve you and your community with relevant programs, services and information. We may also use your Personal Information to develop, evaluate and improve our programs and services. For instance, we may contact you with a survey seeking voluntary feedback on services you have received.
We may use your Personal Information to keep you informed about ACNES-related news developments, to notify you of Foundation services that may be of interest to you, to invite you to upcoming Foundation events in your area, to request voluntary time or monetary contributions to the Foundation, or to request your participation in a Foundation research study.
If you are referred to the Foundation through your healthcare provider and/or health plan, we will use and disclose your Personal Information as necessary, including electronically, to provide you with the assistance, programs or services you have requested, as well as program follow up and evaluation.
Data Analytics. We also perform data analysis and research activities to gain a greater general understanding of ACNES, ACNES treatment and the related needs of patients and their caregivers. This analysis can help us improve patient experiences, mission delivery, and support.
Other Business Purposes. We may use Personal Information for other business purposes, such as conducting audits, fraud monitoring and prevention, developing new services, enhancing, improving or modifying our programs and our Services, identifying usage trends, determining the effectiveness of fundraising campaigns and mission activities, and updating and expanding our business activities.
With your consent. In addition to the other uses described in this section, we may also use your information as you expressly authorize us to do so.
With whom we may share your personal information
Your Personal Information may be shared with:
Third-Party Service Providers. We may need to share Personal Information with third-parties that provide operational services on our behalf (such as website hosting, information technology and infrastructure, data analytics, email delivery, order fulfillment, auditing or other services) or that assist the Foundation in providing you with support and resources.
Foundation Affiliates. We may provide your information to affiliated organizations that share a common mission with the Foundation
Mission Collaborators. We may also collaborate with organizations to provide or improve the Foundation’s services and operations. For example, we may share with organizations that are working with the Foundation to provide free or discounted transportation or lodging services to our constituents or with organizations to conduct data analytics projects that allow us to better understand the use of our services.
Third-Party Charitable Promotions. We may also share your Personal Information, excluding health information, with third-party companies that are conducting charitable sales promotions to benefit the Foundation. You are under no obligation to respond to those promotions, and if you choose not to, the company is restricted from using your contact information for any other purpose.
Social Media. You may share Personal Information with your friends associated with your social media account, to other website users and to your social media account provider, in connection with your social sharing activity. By connecting your Foundation account with your social media account(s), you authorize us to share information with your social media account provider, and you understand that the use of the information we share will be governed by the social media provider’s privacy policy. Please note that any information you post within these public forums or social media pages may become public and may be read, collected, and used by anyone. Please exercise caution when deciding whether to disclose your Personal Information in these forums.
Other Uses or Disclosures of Personal Information. We may also use and disclose your Personal Information as we believe to be necessary or appropriate: (a) to comply with applicable law, which may include laws outside your country of residence, to respond to requests from public and government authorities, which may include authorities outside your country of residence, to cooperate with law enforcement, or for other legal reasons; (b) to enforce our Terms of Use; (c) to protect our rights, privacy, safety or property, and/or that of our affiliates, you or others; and (d) under circumstances we believe appropriate to coordinate treatment related services with your provider or health plan, or for permissible public health purposes such as ACNES surveillance. In addition, the Foundation may use, disclose or transfer your information to a third-party in the event of any reorganization, merger, sale, joint venture, assignment, transfer or other disposition of all or any portion of our organization (including in connection with any bankruptcy or similar proceedings).
Your Consent. In addition to the other disclosures described in this section, we may also disclose your information as you expressly authorize us to do so.
Other information collected
The Foundation may also collect information that does not reveal your specific identity or does not directly relate to an identifiable individual, referred to throughout this Privacy Statement as “Other Information,” including browser and device information, App usage data, Internet Protocol address, information collected through cookies, pixel tags and other technologies. Other Information also includes information that has been anonymized or aggregated in a manner that it no longer reveals your specific identity.
If we are required to treat Other Information as Personal Information under applicable law, then we may use and share it for the purposes for which we use and share Personal Information as detailed in this Privacy Statement.
Browser and Device Information. Certain information is collected by most browsers or automatically through your device, such as your Media Access Control (MAC) address, computer type (Windows or Mac), screen resolution, operating system name and version, device manufacturer and model, language, Internet browser type and version and the name and version of the Services (such as the App) you are using. We use this information to ensure that the Services function properly.
Foundation App Usage Data. When you download and use Foundation Apps, we and our service providers may track and collect App usage data, such as the date and time your device accesses our servers and what information and files have been downloaded to the App based on your device number.
Internet Protocol Address. Your IP address is automatically assigned to your computer by your Internet Service Provider. An IP address may be identified and logged automatically in our server log files whenever a user accesses the Services, along with the time of the visit and the page(s) that were visited. Collecting IP addresses is standard practice and is done automatically by many websites, applications, and other services. We use IP addresses for purposes such as calculating usage levels, diagnosing server problems and administering the Services. We may also derive your approximate location from your IP address.
Web Server Traffic Pattern Information and Browsing History. We collect standard web server traffic pattern information and your browsing history. General traffic, Site usage, browser information and length of stay information is collected and stored in log files.
Cookies. We use “cookies,” small files that are sent to your web browser and stored on your computer’s hard drive, to enhance your online experience. The cookies collect information about your use of our Services, such as the type of browser you use (such as Google Chrome or Internet Explorer), your home domain or Internet service provider, your referrer URL (which is the URL for the website that you were viewing prior to visiting the website), how you were directed to the Services, which specific pages you accessed, how long you view each page, the time and date you access our Services and anonymous traffic data. If you do not want information collected through the use of cookies, most browsers allow you to automatically decline cookies or be given the choice of declining or accepting a particular cookie (or cookies) from a particular website. You may also wish to refer to http://www.allaboutcookies.org/manage-cookies/index.html. If, however, you do not accept cookies, you may experience some inconvenience in your use of the Services.
Using pixel tags and other similar technologies. Pixel tags (also known as web beacons and clear GIFs) may be used to, among other things, track the actions of users of the Services (including email recipients), measure the success of our marketing campaigns and compile statistics about usage of the Services and response rates.
Targeted Outreach and Advertising. We may work with third-party service providers to target advertisements and outreach to you based on your preferences or other information, in some cases combining data we collect from you through online cookies and other technologies with other de-identified data (such as a hashed, non-readable email or postal address). In addition, we may use third-party service providers to display content-specific advertisements to you after you have left our Sites when you go to other websites. These third-party service providers may use cookies, web beacons or similar technologies to tailor advertisements to interests shown by browsing our Sites or other by visiting other websites. We do not control the third-party service providers’ tracking technologies or how they may be used. The collection of your information or use of technologies by third-party service providers is subject to those third-parties’ privacy policies, not the Foundation’s. For more information on these practices or to learn how to opt-out of receiving targeted advertising from many service providers, please visit http://optout.aboutads.info/#!/ and http://optout.networkadvertising.org/.
Do Not Track. Some browsers have a “Do Not Track” feature that lets you tell websites that you do not want to have your online activities tracked. We do not currently respond to browser do-not-track signals.
Analytics. We use Google Analytics and other similar platforms, which uses cookies and similar technologies to collect and analyze information about the use of the Services and report on activities and trends. This service may also collect information regarding the use of other websites, apps, and online resources. You can learn about Google’s practices by going to www.google.com/policies/privacy/partners/ and opt-out of them by downloading the Google Analytics opt-out browser add-on, available at https://tools.google.com/dlpage/gaoptout.
Physical Location. We may collect the physical location of your device by, for example, using satellite, cell phone tower or Wi-Fi signals. We may use your device’s physical location to provide you with personalized location-based services and content. In some instances, you may be permitted to allow or deny such uses and/or sharing of your device’s location, but if you do, we may not be able to provide you with the applicable personalized services and content.
Anonymous or Aggregate Information. We use Anonymous Information and Aggregate Information for activities including data analysis and research to gain a greater general understanding of ACNES, ACNES treatment and the related needs of patients and their caregivers. “Anonymous Information” means information where identifiers have been removed so that it does not directly or indirectly identify, and cannot reasonably be used to identify an individual. “Aggregate Information” means information about groups or categories of individuals which does not identify and cannot reasonably be used to identify an individual. For example, we may use Aggregate Information to compare the types of services our constituents utilize in one geographic location with another to understand how the two groups are different or similar.
Uses and Disclosures of Other Information. We may use and disclose Other Information for any purpose, except where we are required to do otherwise under applicable law. In some instances, we may combine Other Information with Personal Information. If we do this, we will treat the combined information as Personal Information. For example, we may work with data providers to tailor our communications to you, including fundraising and outreach communications, based on your areas of interest and other information about you. To do this, we may place cookies on your browser and combine IP address or browsing history with other de-identified data (such as a hashed, non-readable e-mail or postal address). We may then communicate with you through mail, email, or other channels.
Our data security protections
We seek to use reasonable organizational, technical and administrative measures reasonably designed to secure the information to protect Personal Information within our organization. Unfortunately, no data transmission or storage system can be guaranteed to be 100% secure. If you have reason to believe that your interaction with us is no longer secure, please immediately notify us in accordance with the How To Contact Us section.
Your privacy options and access
Contact Preferences and Restrictions. We respect your privacy and recognize that you may wish to limit the ways in which we contact you and/or share your Personal Information, including for fundraising purposes. The Foundation offers the following options for restricting use and disclosure of your Personal Information:
- Do not contact me by postal mail.
- Do not contact me by telephone.
- Do not contact me by e-mail.
- Do not share my contact information with other nonprofit organizations.
- Do not contact me with fundraising requests supporting the Foundation.
- Do not contact me.
To inform us of any desired restrictions, please notify us at legal@acnesfoundation.org. If you contact us with an opt-out request, we will honor the request in accordance with timelines set forth in applicable law. Please note that if you opt-out of receiving e-mails, we may still send you important administrative messages, from which you cannot opt-out.
Registrations and Subscriptions. If you register for a Foundation event or sign up for a newsletter or similar subscription, you will receive communications related to that service, regardless of your prior opt-out selections. If you no longer wish to receive event e-mails or other e-mail subscriptions, please opt-out using the “unsubscribe” link provided in the e-mail communication.
Mobile Applications. You can stop collection of information by mobile applications easily by uninstalling the application. You may use the standard uninstall processes available as part of your mobile device or network. To discontinue the collection of geolocation data, you can modify your privacy settings on your mobile device.
To Request a Copy of your Personal Information. You may request that the Foundation provide you with a copy of Personal Information that we maintain such as contact information you have provided, contact preferences you have selected, your donation history, your volunteer activity, etc. To make such a request, please send an email to legal@acnesfoundation.org. In your request, please make clear what Personal Information you would like to review. For your protection, we may only implement requests with respect to the Personal Information associated with the email address that you use to send us your request, and we may need to verify your identity before implementing your request. We will try to comply with your request as soon as reasonably practicable, consistent with applicable law.
Notices and Disclosures
Children’s Privacy. The Foundation does not knowingly request or collect information from any person under 13 years of age without parental consent. If you believe that your child has submitted Personal Information to the Foundation without your consent and you would like this info restricted or removed, please contact us at legal@acnesfoundation.org.
Links to Third-Party Websites. Our Services may contain links to third-party websites, whose privacy practices may be different from the Foundation’s. This Privacy Statement does not address, and we are not responsible for, the privacy, information or other practices of any third-parties, including any third-party operating any website or service to which the Services link. Links to other sites do not imply the Foundation’s endorsement of the products or services or privacy or security practices of those websites. In addition, we are not responsible for the information collection, use, disclosure or security policies or practices of other organizations, such as Facebook, Apple, Google, Microsoft, RIM or any other app developer, app provider, social media platform provider, operating system provider, wireless service provider or device manufacturer, including with respect to any Personal Information you disclose to other organizations through or in connection with the Sites or our Social Media Pages.
For California Residents. California Civil Code Section 1798.83 permits California residents to request certain information regarding our disclosure of Personal Information to third-parties for their direct marketing purposes during the preceding calendar year. To make such a request, please contact us by email at legal@acnesfoundation.org. In addition, if you are a California resident under the age of 18 and a registered user of the Services, you may ask us to remove content or information that you have posted to the Sites. To request removal, please contact us at legal@acnesfoundation.org.. We will respond to your request consistent with applicable law. Please note that your request does not ensure complete or comprehensive removal of the content or information, as, for example, some of your content may have been reposted by another user.
Jurisdiction and Cross-Border Transfer. The Services are controlled and operated by us from the United States and are not intended to subject us to the laws or jurisdiction of any state, country, or territory other than that of the United States. Your Personal Information may be stored and processed in the United States where our servers are located and our central database is operated. In certain circumstances, courts, law enforcement agencies, regulatory agencies or security authorities may be entitled to access your Personal Information.
Information on Third-parties. If you disclose any Personal Information relating to other people to us, you represent that you have the authority to do so and to permit us to use the information in accordance with this Privacy Statement.
How to contact us
Privacy Questions and Requests. If you have any questions about this Privacy Statement, wish to notify us of any desired restrictions, or believe your privacy rights may have been violated, please contact us at:
Postal Mail:
American ACNES Foundation, Inc.
4455 Lamont St., Suite 3
San Diego, CA 92109
E-mail: Legal@ACNESFoundation.org
Security Breach or Fraud Notification
If you witness or become aware of any suspected privacy or security breach of Foundation constituent data (i.e., mishandling, theft, loss, or improper disclosure of personal information) or potentially fraudulent activity, please email us immediately and we will reply to your email.
Updates to this privacy statement
The Foundation may modify this Privacy Statement at any time. When changes are made, we will update the “last modified” section at the top of our Privacy Statement. Your use of the Foundation’s Services following these changes means that you accept the revised Privacy Statement.