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ACT Beyond Coverage Privacy Policy

Last updated: January, 2026

Introduction

ACT Beyond Coverage is committed to protecting the personal information of our donors, volunteers, participants, and website visitors. This Privacy Policy explains how we collect, use, store, and safeguard personal information.

Please read this policy carefully to understand our policies and practices regarding your information and how we will treat it. If you do not agree with our policies and practices, your choice is not to use this Website, our social media accounts and our offline sources. By accessing our Website, you agree to this Privacy Policy. This policy may change from time to time. Your continued use of this Website after we make changes is deemed to be acceptance of those changes, so please check the policy periodically for updates.

ACT BEYOND COVERAGE IS NOT A MEDICAL PROVIDER NOR IS IT A “COVERED ENTITY” SUBJECT TO STATE OR FEDERAL LAWS GOVERNING THE PRIVACY OF MEDICAL RECORDS OR INFORMATION, INCLUDING THE HEALTH INSURANCE PORTABILITY AND ACCOUNTABILITY ACT OF 1996, COMMONLY REFERRED TO AS “HIPAA”.

DONOR PRIVACY: We will not sell, share, or trade our donors’ names or personal information with any other entity, nor send mailings to our donors on behalf of other organizations. This policy applies to all information received by ACT Beyond Coverage, both online and offline, as well as any electronic, written, or oral communications.

  1. INFORMATION WE COLLECT

This policy applies to information we collect:

  • on this Website and through our Web Portals.
  • in email, text, and other electronic messages between your and ACT Beyond Coverage.
  • when you interact with our email, social media, and marketing applications.
  • from participant eligibility forms.
  • from our sponsors and donors.
  • from volunteers and board members.
  • from outbound marketing communications.

It does not apply to information collected by:

  • Any third party (including our business partners and service providers), including through any application or content that may link to or be accessible from or on the Website.

Children Under the Age of 18

If you are under 18, do not use or provide any information about yourself to us, including your name, address, telephone number, email address, or any screen name or user name you may use. If we learn we have collected or received personal information from a child under 18 without verification of parental consent, we will delete that information. If you believe we might have any information from or about a child under 18, please contact us at actbeyondcoverage@gmail.com.

  1. INFORMATION WE COLLECT ABOUT YOU AND HOW WE COLLECT IT

We may collect the following types of information from you:

  • Personal information you provide: such as your name, email address, phone number, mailing address, or payment details when you donate, register for events, or contact us.
  • Automatically collected information: such as IP address, browser type, device information, and website usage data.
  • Program‑related information: information you share when you apply for financial assistance, such as your insurance information as well as sensitive information such as medical history and financial information.
  • Donation and transaction information: including donation amounts, payment methods, and giving history.

We collect this information:

  • Directly from you when you enter it in forms or surveys on our Website or through our Web Portals, apply for assistance, subscribe to a newsletter, make a donation, contribute a personal story, reply to us on Social Media (Facebook, LinkedIn,  Instagram and our X (formerly Twitter)) account; provide information by postal mail, telephone, email, or use other features and resources on the Website and in our other social media presences.

We collect Sensitive Information as follows:

  • Sensitive information is collected from users who are applying for funding for treatments and therapies.
    • We may request information such as insurance information, medical conditions, medical history and medications you use and doctor’s notes, to determine whether you qualify for assistance. Your medical conditions may be considered Protected Health Information (“PHI”) and therefore sensitive personal information. You may elect not to provide your medical information, but then you may not be able to receive financial assistance.
    • We may request financial information such as annual income, recent pay stubs, employer letters, or benefit statements (e.g., Social Security, disability, unemployment), as well as household income details including number of earners, combined monthly income, or affidavits of zero income, or other information documenting financial medical hardship, such as caregiving responsibilities, domestic instability, or other factors affecting financial stability.
    • We may request documentation that shows that the treatment or therapy we are providing assistance for, impacts your quality of life positively. You may elect not to provide such information, but then you may not be able to continue to receive financial assistance.
  • Sensitive information is collected from donors and sponsors who make donations to ACT Beyond Coverage. 
  • Automatically as you navigate through the Website and our Web Portals. Information collected automatically may include usage details, IP addresses, and information collected through cookies, web beacons, and other tracking technologies.
  • From third parties, for example, our business partners.

 

  1. HOW WE USE YOUR INFORMATION

We use personal information to:

  • Respond to inquiries or support requests.
  • Determine eligibility for financial assistance for medical treatment or therapies.
  • Carry out our obligations and enforce our rights arising from any contracts entered into between you and us, including for billing and collection.
  • Accept and process donations.
  • Communicate with donors and supporters about contributions.
  • Send newsletters to donors
  • Share stories and comments on social media.
  • Communicate with you about our mission, events, and updates.
  • Improve our website, services, and outreach efforts.
  • Comply with legal or regulatory obligations.
  • Monitor and analyze the use of any account to prevent, investigate and/or report fraud, terrorism, misrepresentation, security incidents, public safety threats to you or crime.
  • To fulfill any other purpose for which you provide it.

We may employ the services of third party service providers to help us in certain areas, such as site hosting and maintenance. If you provide a credit or debit card, we may also use third parties to check the validity of the sort code, account number and card number you submit in order to prevent fraud as well as to process any transaction you attempt via the website.

We do not sell or rent personal information to third parties.

  1. DISCLOSURE OF YOUR INFORMATION

We may disclose aggregated information about our users, and information that does not identify any individual, without restriction. We may disclose personal information that we collect or you provide as described in this privacy policy:

  • To contractors, service providers, and other third parties we use to support our business and who are bound by contractual obligations to keep personal information confidential and use it only for the purposes for which we disclose it to them.
  • To a buyer or other successor in the event of a merger, divestiture, restructuring, reorganization, dissolution, or other sale or transfer of some or all of ACT Beyond Coverage’s assets, whether as a going concern or as part of bankruptcy, liquidation, or similar proceeding, in which personal information held by ACT Beyond Coverage.

We may also disclose your personal information:

  • To comply with any court order, law, or legal process, including to respond to any government or regulatory request.
  • To enforce or apply our Terms of Use and other agreements, including for billing and collection purposes.
  • If we believe disclosure is necessary or appropriate to protect the rights, property, or safety of ACT Beyond Coverage, our participants, donors, or others. This includes exchanging information with other companies and organizations for the purposes of fraud protection and credit risk reduction.
  •  

Accessing and Correcting Your Information.

You may also send us an email at actbeyondcoverage@gmail.com to request access to, correct or delete any personal information that you have provided to us.  We may not accommodate a request to change or delete information if we believe that would result in a violation of the law or cause the information to be incorrect.  If you delete your User 

  • California residents may have additional personal information rights and choices. Please see Your State Privacy Rights, for more information.
  • Nevada residents who wish to exercise their sale opt-out rights under Nevada Revised Statutes Chapter 603A may submit a request to this designated address: actbeyondcoverage@gmail.com. However, please know we do not currently sell data triggering that statute’s opt-out requirements.
  • Colorado, Connecticut, Virginia, and Utah each provide their state residents with rights to:
  • Confirm whether we process their personal information.
  • Access and delete certain personal information.
  • Data portability.
  • Opt-out of personal data processing for targeted advertising and sales.
  • Colorado, Connecticut, and Virginia also provide their state residents with rights to:
  • Correct inaccuracies in their personal information, taking into account the information’s nature processing purpose.
  • Opt-out of profiling in furtherance of decisions that produce legal or similarly significant effects.

To exercise any of these rights please send an email to please send an email to actbeyondcoverage@gmail.com. 

  1. DATA SECURITY

We have implemented measures designed to secure your personal information from accidental loss and from unauthorized access, use, alteration, and disclosure. See our data security measures, below.

  • Your Responsibility. All information you provide to us is stored on our secure servers behind firewalls. The safety and security of your information also depends on you. Unfortunately, the transmission of information via the internet is not completely secure. Although we do our best to protect your personal information, we cannot guarantee the security of your personal information transmitted to our Website. Any transmission of personal information is at your own risk. We are not responsible for circumvention of any privacy settings or security measures contained on the Website.
  • Security Measures. We protect your information using physical, technical, and administrative security measures to reduce the risks of loss, misuse, unauthorized access, disclosure and alteration. 
  • Credit Card Transaction Information. Donor credit card transactions for donations to the ACT Beyond Coverage are processed by our Service Provider Zeffy
  • Donor Documentation. Information about donors may be included in donor documents, proposals, and agreements retained on the Act Beyond Coverage’s systems or Service Provider systems. ACT Beyond Coverage restricts access to donor information to authorized individuals who need that information in order to operate, develop, or improve our operations, our Website and services. These individuals are bound by confidentiality obligations and may be subject to discipline, including termination, if they fail to meet these obligations. 

 

  1. CHANGES TO OUR PRIVACY POLICY

If we make material changes to how we treat our users’ personal information, we will notify you through a notice on the Website home page. The date the privacy policy was last revised is identified at the top of the page.

Contact Information

To ask questions or comment about this privacy policy and our privacy practices, contact us at actbeyondcoverage@gmail.com.