North Star ALS Privacy Policy
- About Our Privacy Policy
North Star ALS (“we,” “us,” “our”) is committed to safeguarding the privacy and trust of our community, donors, and partners. This Privacy Policy (this “Policy”) details how we collect, use, maintain, protect, process, and share information about you through our website, sub-domains, applications, systems, products, services, chat boxes [where available], webinars, newsletters, and other electronic communications in alignment with industry standards and legal requirements, including the California Consumer Privacy Act (CCPA/CPRA).
Please read this notice carefully to understand what we do. If you do not agree with our policy and practices, do not access our website or other systems, use our services, or participate in our programs. By accessing or using our website, systems, and programs, you are accepting the practices described in this Policy.
- Types Of Information We Collect
We collect information based on three primary activities:
- Personally Identifiable Information (“PII”) (Active): Name, postal address, email address, phone number, and professional affiliation, provided to us by filling in the forms on our website or when you otherwise interact with us (e.g., registering for webinars, subscribing to our newsletter, signing up for events, or making a donation). We may retain education and training details (e.g., course name, date attended) and audio recordings, video recordings, and images from these events (e.g., speakers at webinars, podcasts, and similar events). We retain records of your contribution history and engagement level.
- Passive Usage Data (Automated): We automatically collect non-identifiable data, including IP address and other geolocation data, browser type, device information, transactional details (e.g., website registration, date time stamp), permission details (e.g., website preferences), online activity details such as pages viewed, and the referring website. This data is used for internal analysis to improve our outreach and content delivery. Some usage information may be collected through the use of cookies. Please reference the cookies section below for more information.
- Sensitive Personal Information (Protected Health Information - “PHI”): We explicitly request that you DO NOT submit any PHI or sensitive medical data (e.g., specific diagnosis details, genetic information, treatment history, or insurance information). If you choose to share health-related information in open forums, you do so voluntarily and publicly, and at your own risk. We generally do not collect other sensitive information (e.g., social security numbers, racial or ethnic origins, religious beliefs) and request that no such sensitive information be provided to us.
- How We Use PII And Passive Usage Data
- Use of PII: We use the PII we collect to:
- fulfill program requests (e.g., delivery of webinars, newsletters);
- process transactions;
- improve our educational content;
- respond to user questions, comments, or requests;
- communicate with you about our services;
- invite you to support our work (e.g., survey participation, donor opportunities);
- provide industry updates;
- address technical or security issues; and
- comply with applicable laws.
- Use of Passive Usage Data: We use the passive usage data we collect to:
- monitor quality control;
- ensure compliance with applicable laws and contracts;
- improve network and information security; and
- enhance user experience with our website, products, and/or services.
- Disclosure of Information
- No Sale or Renting: We will never sell, rent, or trade your PII or donor information to any third party for marketing purposes.
- Service Providers: We share PII only with contracted service providers (e.g., Neon One CRM, payment processors) who are legally required to maintain the data’s confidentiality and security standards equal to or exceeding our own.
- Legal Proceedings: We share personal information with third-party companies, organizations, or individuals outside of North Star ALS if we have a good-faith belief that access, use, preservation, or disclosure of the information is necessary to:
- Meet any applicable law, regulation, subpoena, legal process, or enforceable governmental request;
- Enforce applicable Terms of Use, including investigation of potential violations;
- Detect, prevent, or otherwise address fraud, security, or technical issues; or
- Protect against harm to the rights, property, or safety of North Star ALS, our users, customers, or the public as required or permitted by law.
- Corporate Restructuring. In the unlikely event that North Star ALS merges with another nonprofit, or is otherwise required to consolidate or transfer all or substantially all of its assets with another nonprofit, then we may be obligated to transfer or share your PII, passive usage data, or other information with the related nonprofit. In this situation, unless permitted otherwise by applicable law, your information would remain subject to this Policy (as revised and updated).
- Your Consent. In addition to the sharing described elsewhere in this Policy, we will share personal information with companies, organizations, or individuals outside of North Star ALS when we have your consent to do so.
- Security of Information
We employ industry-standard safeguards, including secure socket layer (“SSL”) encryption for financial transactions, access controls, and firewall protection, to prevent unauthorized access, use, or disclosure of your PII and we do not store full credit card numbers. However, since the Internet is not a 100% secure environment, we cannot guarantee, ensure, or warrant the security of any information you transmit to us. For example, there is no guarantee that information may not be accessed, disclosed, altered, or destroyed by breach of any of our physical, technical, or managerial safeguards.
- Age Restrictions
- Minors in General. If you are not at least 18 years old, you cannot use our website unless you have your parent or legal guardian’s consent. See our Terms of Use for more information.
- Minors under Age 16. We do not knowingly collect personal information from children under the age of 16. If we learn that personal information of persons less than 16 years old has been inadvertently collected through our website, we will take the appropriate steps to delete this information. If you believe we have collected personal information from a child under the age of 16, please contact us at: privacy@northstarals.org.
- Third-Party Content and Tracking
- Cookies and Tracking: Our website uses cookies and similar tracking technologies to analyze site traffic, personalize your experience, and remember your login status. You may adjust your browser settings to refuse cookies, but some features of the website may not function properly.
- User-Generated Content (“UGC”): Information you voluntarily submit in public areas (e.g., forums, discussions, comments, social media) is considered public information and is not protected by this policy. Please exercise extreme caution when posting personal data in public areas.
- Your Rights and Data Governance
- Data Retention: We will retain PII for as long as reasonably necessary to fulfil the purposes for which it was provided or collected, including for the purposes of satisfying any legal, regulatory, tax, accounting or reporting requirements. We may retain your PII for a longer period in the event of a complaint, if we reasonably believe there is a prospect of litigation in respect to our relationship with you, to comply with law enforcement requests, maintain security, prevent fraud and abuse, resolve disputes, enforce our legal agreements, or fulfil your request to “unsubscribe” from further messages from us. To determine the appropriate retention period for PII, we consider the amount, nature and sensitivity of the PII, the potential risk of harm from unauthorized use or disclosure of your PII, the purposes for which we process your PII and whether we can achieve those purposes through other means, and the applicable legal, regulatory, tax, accounting or other requirements. We will retain some anonymized information (so that it can no longer be associated with you) and we may use this for research or statistical purposes, in which case we may use this information indefinitely without further notice to you.
- Right to Know. You have the right to know certain details about our data practices. In particular, you may request the following from us:
- The PII we have collected about you;
- The categories of sources from which the PII was collected;
- The categories of PII about you we disclosed as allowed under this Policy;
- The categories of third parties to whom the PII was disclosed as allowed under this Policy; and
- The business or commercial purpose for collecting or sharing the PII.
To exercise the Right to Know, please submit a request via email to privacy@northstarals.org. In the request, please specify which right you are seeking to exercise and the scope of the request. We may require specific information from you to help us verify your identity and process your request. If we are unable to verify your identity, we may deny your requests to know.
- Right to Correct or Delete. You have the right to request that we correct or delete the PII we have collected from you. To exercise the right to correct or delete, please submit a request via email to privacy@northstarals.org. We may require specific information from you to help us verify your identity and process your request. If we are unable to verify your identity, we may deny your request to delete. If we deny your request, we will explain the reason why in our response.
- Right to Opt-Out of Shares. You have the right to tell us not to share your information at any time. You may submit a request to opt-out by emailing privacy@northstarals.org. If you do not wish to receive information and promotional material from us or from some of our partners, you may select the appropriate “opt-out” option each time we ask you for information. You can opt-out of emails from us by clicking on the unsubscribe link in each message or emailing us with UNSUBSCRIBE in the subject field of the email.
- Right to Non-Discrimination. You have the right to not receive discriminatory treatment by us for exercising any of your rights.
- Authorized Agent. You can designate an authorized agent to submit requests on your behalf. However, we will require written proof of the agent’s permission to do so and verify your identity directly.
- Changes to Our Privacy Policy
We will update this Policy when necessary to reflect feedback, changes in our programs/projects and services, or legal changes. When we post changes to this Policy, we will revise the “Effective Date” at the top of the Policy. We encourage you to periodically review this Policy to learn how we are processing your information.
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