The Carney Complex Coalition (“the Coalition,” “we,” “us,” or “our”) is committed to protecting your privacy. This Privacy Policy explains what information we collect through the websites located at carneycomplexcoalition.org and carneycomplexcoalition.com (collectively, the “Website”), how we use that information, and your rights in relation to it.

 

1. Information We Collect

 

Personal Information

We may collect personal information that you voluntarily provide, including your name, email address, phone number, mailing address, and basic demographic information.

 

Health-Related Information

We may collect information you choose to share, such as your diagnosis and your role within the community (e.g., patient or caregiver). This information helps us provide relevant resources, support, and community connections.

 

The Carney Complex Coalition is not a covered entity under the Health Insurance Portability and Accountability Act (HIPAA) and does not provide medical care or treatment. Accordingly, information collected through this Website is not subject to HIPAA and is not treated as Protected Health Information (PHI) under HIPAA.

 

Technical Data

We automatically collect certain information through cookies and similar technologies, including IP address, browser type, and device identifiers. The Website is hosted on Wix, which may use its own analytics tools.

 

2. How We Collect Information

 

We collect information in the following ways:

 

• Voluntary Submission: When you provide information through forms (e.g., newsletter sign-ups, event registrations, surveys, or support requests).

 

• Automated Technologies: Through cookies and third-party analytics tools (such as Google Analytics) that help us understand how users interact with the Website.

 

• Direct Communication: When you contact us via email or other communication channels.

 

3. How We Use Your Information

 

We use your information to:

 

• Provide updates, educational resources, and event communications

• Improve Website functionality and user experience

• Conduct internal research and reporting using aggregated, non-identifiable data

 

4. Data Sharing and Third Parties

 

Service Providers

We use trusted third-party service providers (such as Google Analytics and Mailchimp) to operate the Website and communicate with users. These providers access information only as necessary to perform services on our behalf.

 

No Sale of Data

We do not sell or rent your personal information.

 

Research and Reporting

We may share de-identified, aggregated data with partners for research or reporting purposes. This data does not include personally identifiable information.

 

Legal Requirements

We may disclose your information if required to do so by law, regulation, or legal process (such as a court order).

 

5. Data Storage and Security

 

We implement reasonable administrative, technical, and physical safeguards to protect your information. Data may be stored using secure cloud-based platforms, and access is limited to authorized Coalition personnel.

 

6. Children’s Privacy

 

The Website is not intended for children under the age of 13. In accordance with the Children’s Online Privacy Protection Act (COPPA), we do not knowingly collect personal information from children under 13. If we become aware that such information has been collected, we will delete it promptly.

 

7. Your Rights

 

You may request to access, update, or delete your personal information at any time. To exercise these rights, please contact us at: carneycomplexcoalition@gmail.com.

 

8. International Users

 

The Coalition is based in the United States. If you access the Website from outside the United States, you acknowledge that your information may be processed and stored in the United States, where data protection laws may differ from those in your jurisdiction.

 

We strive to comply with applicable data privacy laws.

 

9. Changes to This Policy

 

We may update this Privacy Policy from time to time. Any changes will be posted on this page with an updated “Effective Date.” We encourage you to review this policy periodically.