Privacy Policy

1 Policy Summary

TREND Community advances understanding of rare and chronic diseases through community-powered analytics.
This policy outlines our privacy practices for our Services.

Key definitions:

• Personal Information: Any data that identifies or can reasonably be used to identify you, including name, contact details, and health information.
• Services: All TREND offerings, including TREND Connect, Connect Communities, and our website.

Key points:

1. We collect Personal Information.
2. We use your data to generate insights about rare and chronic diseases, develop reports, support initiatives designed to drive healthcare progress, facilitate participation with our Services, and communicate with you about your use of our Services.
3. In Connect Communities, you can share content with others. Be mindful of the personal information you post.
4. We employ robust security measures designed to protect your sensitive health-related data.
5. You can review, correct, or update your Personal Information and manage your communication preferences.
6. We store data in the United States.
7. You have rights to access, correct, or delete your Personal Information, subject to certain limitations.
8. Our Services are not for children under 13; we don’t knowingly collect information from them.

By using our Services, you contribute to improving the world’s understanding of all diseases. We’re committed to responsibly managing your data while advancing this vision.

For questions or concerns, contact us at privacy@trend.community.

2 Who is TREND Community

TREND Community PBC (“TREND,” “we,” “us,” “our”) is a community-powered data analytics company dedicated to unlocking insights from conversations about people living with rare and chronic diseases. Our mission is to drive progress in healthcare by delivering actionable, real-world insights.

3 Scope of This Policy

This privacy policy applies to all users of our Services, including:

• TREND Connect platform users
• Connect Communities participants
• Visitors to our website (www.trend.community)
• Participants in interviews, surveys, or focus groups conducted by TREND
• Anyone who provides personal information to TREND with explicit consent

This policy explains how we collect, use, protect, and share Personal Information obtained through our Services. By using our Services, you acknowledge that you have read and understood this policy. This policy is supplemented by our TREND Community Social Listening Privacy Policy. To the extent there are conflicting terms between this policy and the Social Listening Privacy Policy, the terms of this policy prevail.

4 Data Collection: Personal Information

We collect Personal Information directly from you when you choose to provide it to us. The types of information we collect depend on how you interact with our Services:

For TREND Connect:

• Name
• Email address
• Date of birth
• Country of residence
• Gender identity
• Sex at birth
• Race
• Ethnicity
• Relevant disease information and relationship to the disease

For Connect Communities:

• User-generated content (posts, comments)
• Engagement data (reactions, timestamps)
• Profile information you choose to share

Website and Other Interactions:

• Contact information (e.g., email address, phone number)
• Demographic information
• Survey responses and interview data
• Website usage data and analytics

4.1 How Do I Change My Personal Information and Communication Preferences

You are responsible for maintaining the accuracy of the Personal Information you provide to us, such as your contact details submitted during registration. Our Services allow you to review, correct, or update the Personal Information you’ve shared. You can also request updates and changes by contacting us directly.

We will make good faith efforts to implement requested changes to or removal of Personal Information in our active databases as soon as reasonably practicable. However, please note that it’s not always possible to completely remove or delete all your Personal Information from our systems. Residual data may remain in our archives or backup systems for technical or operational reasons.

When you edit your Personal Information, change your preferences through our Services or request our deletion of your Personal Information, the information you remove may be retained internally for TREND’s administrative and legal compliance purposes.

If you have any questions about this Privacy Policy or the practices described in it, please contact us at privacy@trend.community.

5 How We Use Collected Personal Information

5.1 Primary Use

We use the collected Personal Information to:

• Provide and improve our Services
• Develop reports (e.g., Community Voice Reports, Data Exploration Reports)
• Create website content to share insights
• Generate materials (e.g., posters, articles) supporting our mission
• Deepen understanding of disease experiences and management
• Identify patient burdens and unmet needs
• Provide actionable insights to drive healthcare progress
• Facilitate matchmaking within Connect Communities
• Identify potential opportunities with industry partners (with your consent)

Our legal basis for processing is your explicit consent and our legitimate interest in advancing understanding of rare and chronic diseases and driving healthcare progress.

5.2 Secondary Use

We may also use the data to:

• Improve our Services and user experience
• Comply with legal and regulatory requirements
• Protect our legal rights and obligations
• Communicate with you about our Services and community activities

We do not sell Personal Information for marketing purposes. When using sensitive health information, we do so based on your explicit consent and handle it with utmost care.

6 User-Generated Content in Connect Communities

Our Connect Communities, hosted on platforms such as Discord, allow you to share various types of content, including text, images, videos, and audio (collectively, “User Content”). This User Content may include Personal Information that you choose to disclose.

6.1 Visibility and Sharing of User Content

When you post User Content in Connect Communities:

• Other community members can view and potentially share your content.
• The hosting platform (e.g., Discord) may have access to this content according to their own privacy policies.
• TREND cannot fully control who accesses information you choose to post or how they use it.

6.2 Considerations When Sharing

We encourage you to think carefully about the information you share:

• Be cautious about sharing sensitive Personal Information or health data.
• Remember that images or videos may contain metadata (such as location data) that you might not intend to share.
• Consider the privacy settings offered by the community platform and use them to manage your content’s visibility.

6.3 TREND’s Use of User Content

As outlined in Section 4 (How We Use Collected Data), we may use User Content to generate insights and reports. However, we strive to anonymize and aggregate this data to protect your privacy.

6.4 Platform-Specific Policies

While we take measures to protect your privacy within our Services, please note that the platforms hosting our Connect Communities (such as Discord) have their own privacy policies and data practices. We encourage you to review these policies as well.

7 Collaboration and Sharing Insights

We share anonymized, aggregated insights with:

• Healthcare providers and researchers
• Patient advocacy organizations
• Pharmaceutical and biotechnology companies
• Academic institutions
• Community groups

We may also share data:

• With regulatory agencies to comply with obligations
• With legal authorities when required by law
• With professional advisors as necessary
• With service providers to improve our services
• In the event of a business transfer or restructuring

We never share raw data or information that could reasonably identify individuals without explicit consent.

8 Data Protection Measures

We understand the sensitivity of the information shared within our community and take its protection seriously. In an effort to safeguard collected Personal Information, we implement:

• Encryption for data in transit and at rest
• Strict access controls and multi-factor authentication
• Regular security audits and vulnerability assessments
• Staff training on data protection and privacy
• Incident response procedures

While no system is completely impervious to threats, we continuously work to enhance our security measures and adapt to new challenges to keep our community’s information safe.

9 International Data Transfers

The www.trend.community website and its Services are operated in the United States. If you are located outside the United States, please be aware that information we collect, including Personal Information, will be transferred to, processed, stored, and used in the United States. The data protection laws in the United States may differ from those of the country in which you are located, and your Personal Information may be subject to access requests from governments, courts, or law enforcement in the United States according to U.S. law. By using the Sites or providing us with any information, you consent to the transfer to and processing, usage, sharing, and storage of your information, including Personal Information, with the United States as set forth in this Privacy Policy. We understand the importance of data sovereignty and privacy. If you have any questions about how your information is stored in the U.S. or the protections we have in place, please don’t hesitate to contact us at privacy@trend.community.

10 Data Retention

We retain your Personal Information for as long as necessary to provide our services and fulfill the purposes outlined in this policy, unless a longer retention period is required by law. You can request deletion of your data at any time, subject to any legal obligations we may have to retain certain information.

For TREND Connect, we retain your data as long as you maintain an account. If you choose to delete your account, we will remove your Personal Information from our active databases, though some information may remain in encrypted backups for a limited time.

11 Your Rights and Choices

While we collect publicly available information, we respect your privacy rights:

• Access: You can request information about any of your data we may have collected.
• Correction: You can ask us to correct any inaccurate data we hold about you.
• Deletion: You can ask us to delete any information we have associated with you.
• Restriction: You can ask us to restrict the processing of your data under certain circumstances.
• Data Portability: You can request a copy of your data in a structured, commonly used, and machinereadable format.
• Objection: You have the right to object to our processing of your data in certain circumstances.
• Withdraw Consent: Where processing is based on consent, you can withdraw that consent at any time.

Making a request
To exercise any of these rights:

• Only you or a person you have authorized to act on your behalf may make a request related to your Personal Information.
• You may also make a verifiable request for your minor child or ward.
• If you submit a request through an authorized agent, the agent must present signed written permission to act on your behalf, and you may also be required to independently verify your identity with us.

Verification Process
To protect your Personal Information:

• We may ask you or your authorized agent to provide additional Personal Information to verify your identity.
• Any information you provide will only be used to confirm your identity and complete your request.
• If we cannot verify your identity, we will not be able to comply with your request to protect your Personal Data.

For any questions about your rights or to make a request, please contact us at privacy@trend.community.

12 Children’s Privacy

We understand the importance of protecting children’s privacy in the interactive world. We are a general audience service and do not knowingly collect personal information from children under the age of thirteen (13) through our Sites without parental consent, as required by the Children’s Online Privacy Protection Act (COPPA). If you are a child under 13 years of age, you are not permitted to use the Sites and should not send any information about yourself to us through the Sites. In the event that we become aware that we have collected personal information from a child, we will dispose of that information in accordance with COPPA and other applicable laws and regulations. If you are a parent or guardian and you believe that your child under the age of 13 years has provided us with personal information without COPPA-required consent, please contact us as indicated previously.

13 Updates to This Policy

We reserve the right to change this Privacy Policy at any time. Any changes will be effective immediately upon the posting of the revised Privacy Policy, and your use of the Sites indicates your consent to the privacy policy posted at the time of use. However, we will not use your previously collected Personal Information in a manner that is materially different from that represented at the time it was collected without your consent. To the extent that any provision of this Privacy Policy is found by a competent tribunal to be invalid or unenforceable, such provision shall be severed to the extent necessary for the remainder to be valid and enforceable.

14 Contact Us

If you have any questions about this policy or our practices, please contact us at: privacy@trend.community.