Privacy Policy

Effective Date: April 6, 2025
Organization: Complex Disorders Alliance ("CODA")
Website: www.complexdisorders.org

1. Introduction

At Complex Disorders Alliance (CODA), your privacy is important to us. This Privacy Policy explains how we collect, use, and protect your personal information when you interact with our website and services. CODA is a nonprofit organization dedicated to advancing research and awareness for complex medical disorders.

2. Information We Collect

We may collect the following categories of personal information:

  • Contact Information: Name, email address, phone number, mailing address

  • Donor Information: Payment details (processed securely by third-party platforms), donation history

  • Research Participation Data: Health-related or demographic information voluntarily provided through surveys, forms, or interviews

  • Volunteer Information: Availability, areas of interest, experience, and relevant skills

  • Newsletter Signups: Email addresses and communication preferences

  • Website Usage Data: IP addresses, browser type, pages visited, time spent, and other usage analytics via cookies or similar technologies

3. How We Use Your Information

We use personal information to:

  • Respond to inquiries and requests

  • Process donations and provide tax receipts

  • Communicate updates about research, events, and news via email newsletters

  • Recruit and coordinate volunteers for projects and events

  • Analyze and improve our website and outreach

  • Support ethically approved research projects

4. Research Ethics and Data Use

CODA adheres to strict research ethics and privacy standards. Any data collected for research purposes:

  • Will only be used with your informed consent

  • May be anonymized and aggregated to protect individual identities

  • Will not be shared outside of approved research projects or partnerships

  • Will be reviewed and governed by appropriate research oversight or Institutional Review Board (IRB) protocols when applicable

Participation in any research project is entirely voluntary and will include clear information about how your data will be used.

5. Volunteer Signups

When you sign up to volunteer, we collect basic information to match your interests and availability with our needs. Your personal data will only be used for volunteer coordination and communication purposes. We will not share this information externally without your explicit consent.

6. Email Newsletters and Communication Preferences

If you subscribe to our newsletter or updates, we will use your email address to share news, stories, upcoming events, and fundraising opportunities. You can unsubscribe at any time using the link provided in each email or by contacting us directly.

7. Sharing Your Information

We do not sell or rent your personal data. We may share information with trusted third-party vendors who assist with services such as donation processing, email communications, or research operations—only to the extent necessary and under confidentiality obligations.

8. Data Security

We implement appropriate technical and organizational safeguards to protect your personal data against loss, misuse, or unauthorized access. Donation and payment information is handled securely by PCI-compliant providers.

9. Your Rights

You may have rights under applicable data protection laws, including the ability to:

  • Access and correct your personal data

  • Withdraw consent or request deletion of your information

  • Object to or restrict certain uses of your data

  • Opt out of communications

To exercise any of these rights, email us at: info@complexdisorders.org

10. Cookies and Website Analytics

Our website uses cookies and analytics tools to enhance user experience and understand visitor behavior. You may choose to disable cookies through your browser settings.

11. External Links

Our website may include links to external sites. CODA is not responsible for the privacy practices or content of these third-party websites.

12. Children’s Privacy

We do not knowingly collect personal information from children under 13 years old. If we become aware that we have received such information, we will take steps to delete it promptly.

13. Changes to This Policy

We may update this Privacy Policy occasionally to reflect legal or operational changes. The most current version will always be posted on our website with an updated effective date.

14. Contact Us

If you have any questions, concerns, or requests regarding your personal data or this policy, please contact:

Complex Disorders Alliance (CODA)
Email: info@complexdisorders.org