Privacy Policy

Deborah Kan Media PBC | beingpatient.com

Effective Date: July 1, 2026 | Last Updated: July 21, 2026

1. Introduction and Scope

This Privacy Policy describes how Deborah Kan Media PBC (“Being Patient,” “we,” “us,” or “our”) collects, uses, stores, shares, and protects information about you when you use:

The Being Patient website at beingpatient.com (the “Site”);
Our email newsletter and other communications;
Carey, our AI-powered care companion chatbot (the “Carey Service”); and
Any other products or services we offer that link to this Privacy Policy.

This Policy applies to all users of the Site and the Carey Service, regardless of where you are located, including users in the United States, the European Union, the United Kingdom, and California. Where your location grants you specific rights, those rights are described in the applicable sections below. The Carey Service is currently not available in Europe.

By using the Site or the Carey Service, you acknowledge that you have read and understood this Privacy Policy.

2. Who We Are

Being Patient is operated by Deborah Kan Media PBC, a public benefit corporation. Being Patient provides editorially independent journalism, educational resources, and community support for people affected by Alzheimer’s disease, dementia, and related conditions.

For privacy inquiries, data subject requests, or questions about this Privacy Policy, please contact us at:

Deborah Kan Media PBC

Email: info@beingpatient.com

Mailing Address: 2443 Fillmore Street #175, San Francisco, CA 94115

3. Age Restriction

The Site and the Carey Service are intended for users who are 18 years of age or older. We do not knowingly collect personal information from anyone under the age of 18. By using the Carey Service, you confirm that you are at least 18 years old.

If you are a parent or guardian and believe that a minor has provided us with personal information, please contact us immediately at info@beingpatient.com so that we can take appropriate action.

4. Information We Collect

4.1 Information You Provide Directly

When you interact with the Site or the Carey Service, you may provide us with:

Contact information such as your name and email address when you subscribe to our newsletter or contact us;
Your self-identified relationship to dementia (e.g., patient, family caregiver, medical professional) when you subscribe to our newsletter;
Donation and payment information when you make a financial contribution through our donations page (processed by NationBuilder, our third-party payment processor); and
Any information you voluntarily share in conversations with Carey, including information about yourself, a person in your care, or your caregiving situation.

4.2 Information Collected Through the Carey Service

When you use the Carey Service, we collect and store:

The full text of your conversations with Carey, including any questions you ask and any information you share about yourself or others in your care; and
Any health-related information you choose to disclose, which may include diagnoses, genetic status, medications, symptoms, or care circumstances.

Health-Related Information: We recognize that users of the Carey Service may share sensitive health-related information in the course of seeking information and support. We treat all such information with strict confidentiality. Please note, however, that the Carey Service is not a healthcare provider and your conversations with Carey do not constitute a patient-provider relationship. See Section 10 (Medical Disclaimer) for more information.

Currently Anonymous Use: As of the effective date of this Privacy Policy, the Carey Service is available without requiring you to create an account. Conversations are stored but are not linked to your name or email address unless you choose to provide that information within the conversation itself. We intend to introduce optional account functionality in the future, at which point this Policy will be updated.

Data Retention: Anonymous conversation data is retained for 30 days from the date of the session, after which it is permanently deleted from our systems.

4.3 Information Collected Automatically

When you visit the Site, we and our third-party analytics providers automatically collect certain technical information, including:

Your IP address and approximate geographic location;
Browser type and version;
Device type and operating system;
Pages visited, time spent on pages, and referring URLs; and
Cookie identifiers and similar tracking technologies (see Section 7 for more information on cookies).

4.4 Information from Third Parties

We may receive information about you from third parties such as our email service provider, analytics providers, and advertising partners. We combine this information with information we collect directly from you only as permitted by this Privacy Policy.

5. How We Use Your Information

5.1 Website and Newsletter

To operate and improve the Site;
To send you our newsletter and other communications you have requested;
To analyze how users interact with the Site in order to improve our content and user experience;
To process donations and maintain related records;
To respond to your inquiries; and
To comply with legal obligations.

5.2 Carey Service

We use the information collected through the Carey Service to:

Generate responses to your questions using our AI systems and Being Patient’s journalism as a knowledge source;
Improve the accuracy, relevance, and safety of Carey’s responses;
Monitor for harmful, abusive, or technically erroneous interactions;
Develop new features and future versions of the Carey Service; and
Comply with legal obligations, including responding to lawful requests from public authorities.

We do not use the content of your Carey conversations to send you marketing communications, and we do not sell conversation data to third parties.

6. How We Share Your Information

6.1 AI Processing Provider

The Carey Service is powered by artificial intelligence technology provided by OpenAI OptCo, LLC. When you submit a message to Carey, that message is transmitted to OpenAI’s API for processing in order to generate a response. OpenAI processes this data as a data processor on our behalf under contractual terms that restrict its use of your data.

6.2 Data Storage Provider

Conversation data and other user data is stored using Supabase, Inc. as our database and infrastructure provider. Supabase processes and stores data on our behalf as a data processor.

6.3 Analytics and Advertising

We use Google Analytics to understand how users engage with the Site. Google Analytics may collect information about your device and browsing behavior through cookies. You can opt out of Google Analytics tracking by using the Google Analytics Opt-Out Browser Add-on available at https://tools.google.com/dlpage/gaoptout.

6.4 Legal and Safety Disclosures

We may disclose your information if we believe in good faith that such disclosure is necessary to: (a) comply with applicable law or respond to valid legal process; (b) protect the rights, property, or safety of Being Patient, our users, or others; or (c) detect, prevent, or address fraud, security, or technical issues.

6.5 Business Transfers

If Being Patient is involved in a merger, acquisition, or sale of assets, your information may be transferred as part of that transaction. We will provide notice before your information is transferred and becomes subject to a different privacy policy.

6.6 No Sale of Personal Information

We do not sell your personal information, including conversation data from the Carey Service, to any third party.

7. Cookies and Tracking Technologies

Our Site uses cookies and similar tracking technologies to improve your experience, analyze traffic, and serve relevant content and advertising.

Types of cookies we use:

Strictly necessary cookies: Required for the Site to function. These cannot be disabled.
Analytics cookies: Help us understand how users interact with the Site (e.g., Google Analytics).
Advertising cookies: Served by our advertising partner to display relevant advertisements.

On your first visit to the Site, you will be presented with a cookie consent notice. You may accept or decline non-essential cookies at that time, or manage your preferences through your browser settings.

Please note that disabling certain cookies may affect the functionality of the Site.

8. Your Privacy Rights

8.1 Rights for All Users

Regardless of your location, you may:

Request information about what data we hold about you;
Request correction of inaccurate information;
Request deletion of your data, subject to certain practical and legal exceptions; and
Opt out of our email newsletter at any time by clicking the unsubscribe link in any email we send.

To exercise these rights, contact us at info@beingpatient.com. We will respond to verifiable requests within 30 days, or as otherwise required by applicable law.

Note on anonymous Carey data: Because Carey currently operates without requiring an account, we may be unable to identify and retrieve conversation data associated with a specific individual unless you provide us with the approximate date and time of your session and any identifying information you shared within the conversation itself.

8.2 Rights for California Residents (CCPA/CPRA)

If you are a California resident, you have the following rights under the California Consumer Privacy Act (as amended by the California Privacy Rights Act):

Right to Know: You may request that we disclose the categories and specific pieces of personal information we have collected about you, the sources of that information, the business or commercial purpose for collecting it, and the categories of third parties with whom we share it.
Right to Delete: You may request deletion of personal information we have collected from you, subject to certain exceptions.
Right to Correct: You may request correction of inaccurate personal information.
Right to Opt Out of Sale or Sharing: We do not sell personal information. However, our use of advertising cookies may constitute “sharing” under California law. You may opt out by managing cookie preferences on the Site or by using a Global Privacy Control signal in your browser.
Right to Non-Discrimination: We will not discriminate against you for exercising any of your CCPA rights.

To submit a California privacy request, contact us at info@beingpatient.com or write to us at our mailing address above. We will respond within 45 days of receiving a verifiable consumer request.

9. Data Security

We take the security of your information seriously. We implement technical and organizational measures designed to protect your data against unauthorized access, alteration, disclosure, or destruction. These measures include:

Encryption of data in transit using TLS (Transport Layer Security);
Encryption of data at rest within our database infrastructure;
Access controls limiting who within our organization can access stored conversation data;
Row-level security controls within our database to isolate user data;
Regular review of our security practices.

Please be aware that no method of transmission over the internet or method of electronic storage is 100% secure. While we strive to use commercially reasonable means to protect your information, we cannot guarantee its absolute security.

10. Medical Disclaimer — Carey Is Not a Healthcare Provider

Please read this section carefully.

The Carey Service is an AI-powered information and support tool. Carey is designed to help users navigate Being Patient’s journalism and educational content related to Alzheimer’s disease, dementia, and caregiving.

Carey is NOT a medical professional. Carey does NOT provide medical advice, diagnosis, or treatment recommendations. Nothing in your conversations with Carey should be construed as medical advice or as a substitute for consultation with a qualified healthcare provider.

If you have concerns about a diagnosis, medication, symptom, or care decision, please consult a licensed physician or other qualified healthcare professional. In an emergency, call 911 or your local emergency services immediately.

Your conversations with Carey do not create a patient-provider relationship. Being Patient does not assume any liability for decisions made based on information provided by the Carey Service.

11. HIPAA Notice

Being Patient is a journalism and information platform and is not a healthcare provider, health plan, or healthcare clearinghouse as defined under the Health Insurance Portability and Accountability Act (HIPAA). Accordingly, the Carey Service is not designed or intended to function as a HIPAA-compliant system.

We strongly advise users not to share Protected Health Information (PHI) as defined by HIPAA through the Carey Service. While we treat all health-related information disclosed through Carey with strict confidentiality as described in this Policy, we cannot guarantee HIPAA compliance for information shared through the Carey Service.

12. Children’s Privacy

The Site and the Carey Service are not directed at children under the age of 18. We do not knowingly collect personal information from children. If we become aware that we have collected personal information from a child under 18 without parental consent, we will take steps to delete that information as quickly as possible. If you believe we may have collected information from a child, please contact us at info@beingpatient.com.

13. Third-Party Links and Services

The Site may contain links to third-party websites, resources, or services. This Privacy Policy applies only to the Site and the Carey Service. We are not responsible for the privacy practices of third-party websites. We encourage you to review the privacy policies of any third-party sites you visit.

14. Email Communications

If you subscribe to our newsletter, we will use your email address to send you our weekly newsletter and, if you have opted in, quarterly updates on clinical trials. We may use email marketing platforms that track subscriber activity such as email opens, link clicks, and engagement frequency. This data is used to improve our communications and is not shared with third parties for marketing purposes.

You may unsubscribe from our newsletter at any time by clicking the unsubscribe link at the bottom of any email we send. Unsubscribing from the newsletter does not delete any other data we may hold about you.

15. Changes to This Privacy Policy

We may update this Privacy Policy from time to time to reflect changes in our practices, technology, legal requirements, or for other operational reasons. When we make material changes, we will update the “Last Updated” date at the top of this Policy and, where required by law, notify you by email or by a prominent notice on the Site.

Your continued use of the Site or the Carey Service after any such update constitutes your acceptance of the revised Policy. We encourage you to review this Policy periodically.

16. Contact Us

If you have any questions, concerns, or requests related to this Privacy Policy or our data practices, please contact us:

Deborah Kan Media PBC