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North Star ALS Privacy Policy
Effective Date: January 21, 2026 | Last Updated: January 2026
North Star ALS is committed to safeguarding the privacy and trust of our community, donors, and partners. This Policy details our data governance practices, aligning with industry standards and legal requirements, including the California Consumer Privacy Act (CCPA/CPRA).
1. Information We Collect
We collect information based on three primary activities:
- A. Personally Identifiable Information (PII) - (Active): Name, postal address, email address, phone number, and professional affiliation, submitted when you register for webinars, subscribe to our newsletter, or make a donation. We retain records of your contribution history and engagement level.
- B. Passive Usage Data - (Automated): We automatically collect non-identifiable data, including IP address, browser type, device information, pages viewed, and the referring website. This is used for internal analysis to improve our outreach and content delivery.
- C. Sensitive Information (Protected Health Information - PHI): North Star ALS explicitly requests 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.
2. Use, Disclosure, and Security
- Mission Use: Data is used exclusively to fulfill program requests (delivery of webinars/newsletters), process transactions, and for internal analysis to improve our educational content.
- 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., 3rd party CRM systems, payment processors) who are legally required to maintain the data's confidentiality and security standards equal to or exceeding our own.
- Data Security: 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. We do not store full credit card numbers.
3. 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 (forums, 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.
4. Your Rights and Data Governance
You maintain several rights over your data, which we commit to honoring:
- Data Retention: We retain your PII only for as long as is necessary to fulfill the purposes outlined in this Policy, manage our contractual relationship with you, and comply with mandatory legal and financial reporting obligations.
- Right to Access, Correction, and Deletion: You have the right to request access to the PII we hold about you and to request correction of inaccuracies or deletion of your PII. We commit to responding to all formal requests within 45 days (in alignment with CCPA/CPRA standards).
Contact for Privacy Concerns:
Please direct all questions or requests regarding this Privacy Policy to:
Email: privacy@northstarals.org
North Star ALS Terms & Conditions Agreement
Effective Date: January 21, 2026 | Supersedes all prior agreements.
Please read these Terms & Conditions ("Terms") carefully. By accessing or using the North Star ALS website, mobile application, forums, and digital services (collectively, the "Services"), you agree to be bound by these Terms.
1. Acceptance, Eligibility, and Scope
1.1 Eligibility: The Services are available only to users who can form legally binding contracts. By accessing or using the Services, you represent and warrant that you are at least 18 years of age and, if you are using the Services on behalf of another entity, that you are authorized to accept these Terms on that entity’s behalf.
1.2 Agreement: Your continued use of the Services signifies your acceptance of these Terms. North Star ALS reserves the right to modify these Terms at any time without notice; continued use constitutes acceptance of all modifications.
2. Medical and Health Disclaimer
2.1 No Professional Advice: All Program Information provided by North Star ALS is strictly for educational and informational purposes only. This information does not constitute, and is not a substitute for, medical advice, diagnosis, treatment, or clinical guidance from a licensed healthcare professional.
2.2 Responsibility: You are solely responsible for consulting with your personal physician or care team regarding any medical condition or decisions about treatment and trial participation.
3. Intellectual Property, Content, and License
3.1 Ownership: All content on the Services, including text, graphics, data summaries, webinar recordings, and organization logos ("Foundation Content"), is the exclusive property of North Star ALS and is protected by U.S. and international copyright laws.
3.2 No License Granted: Save as expressly set out herein, no license is granted in respect of any intellectual property rights vested in North Star ALS. You may not copy, reproduce, distribute, modify, frame, or commercially exploit any Foundation Content without the express written permission of North Star ALS.
4. User-Generated Content (UGC) and Misuse
4.1 User Content Responsibility: You are solely responsible for all content you post to public areas (forums, comments). You agree not to upload any content that offers medical advice, is abusive, defamatory, or infringes on the IP rights of a third party.
4.2 Right to Terminate Access: North Star ALS reserves the explicit right to suspend or permanently terminate your access and use of the Services at any time, for any reason, and without notice, particularly in the event of misuse or violation of these Terms.
5. Limitation of Liability and Warranty Disclaimer
5.1 Disclaimer of Warranty: The Services are provided for use "AS IS" and without any warranty or condition, express, implied, or statutory. North Star ALS specifically disclaims the implied warranties of merchantability, satisfactory quality, and fitness for a particular purpose relating to the Services. No representations or warranties are given as to the accuracy or completeness of the information provided.
5.2 Limitation of Liability: In no event shall North Star ALS, its officers, directors, or employees, be liable for any direct, indirect, incidental, or consequential damages, including loss of income or profit, loss of or damage to property, or claims of third parties, arising out of or in connection with your use of the Services.
6. Governing Law and Jurisdiction
These Terms shall be governed by and construed in accordance with the laws of the State of California, U.S.A., without regard to conflict of law principles. You agree that any legal action or dispute arising out of or relating to these Terms shall be filed exclusively in the courts located in Santa Barbara County, California.
Contact:
For questions regarding these Terms & Conditions, please contact us at: legal@northstarals.org