Social Listening Privacy Policy

1 Policy Summary

TREND Community advances understanding of rare and chronic diseases through community-powered analytics, including social listening. This policy outlines our privacy practices for our social listening activities.

Key definitions:

• Conversations: Publicly available content authored by individuals on social media platforms and forums
• Personal Information: Any data that identifies or reasonably can be used to identify you, including usernames, content you’ve authored, and other public profile information
• Social Listening: The process of collecting and analyzing public online conversations to gain insights about rare and chronic diseases

Key points:

1. We only collect information that you have made publicly available on social media platforms and forums.
2. We use collected data to generate insights about rare and chronic diseases, develop reports, and support initiatives designed to drive healthcare progress.
3. We do not collect private messages or information from accounts set to private.
4. Our analysis may infer additional information from your public posts, such as symptoms or quality of life impacts.
5. We employ security measures to protect the data we collect, even though it’s publicly available.
6. We share anonymized, aggregated insights with healthcare providers, researchers, and other stakeholders to advance understanding of diseases.
7. You have the right to request that we exclude your public posts from our analyses, subject to certain limitations.
8. We store data in the United States.
9. Our social listening activities are not directed at children under 13, and we don’t knowingly collect information from them.

By sharing information publicly about rare and chronic diseases, you contribute to improving the world’s understanding of these conditions. We’re committed to responsibly managing these data while advancing this vision. For questions or concerns about our social listening practices, 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 policy applies to you if you publish information on publicly available websites such as Reddit, Facebook, and other platforms where we access data through their official services. This policy supplements our Trend Community General Privacy Policy. To the extent there are conflicting terms between this policy the General Privacy Policy, the terms of the General Privacy Policy prevail.

4 Data Collection: Conversations and Personal Information

We collect publicly available Conversations and associated Personal Information from social media platforms and online forums. It’s important to emphasize that we can only access and collect information that you have chosen to share publicly. This may include:

• Usernames or handles
• Content you have authored (e.g., comments, posts, replies)
• Group details (e.g., group name, description, timestamps, member counts)
• General location data (if publicly available)
• Public profile information
• Hashtags and topic markers
• Engagement metrics (e.g., likes, shares, retweets)

We may also analyze this publicly shared data to infer additional information, such as:

• Disease-specific symptoms and experiences
• Quality of life impacts
• Potential comorbidities
• Unmet needs in disease management
• Effectiveness of treatments or interventions
• Emotional states or sentiments related to health experiences
• Patterns in disease presentation or progression
• User journey insights over time

We only access this information through official Application Programming Interfaces (APIs) or processes provided by content platforms, respecting each platform’s terms of service and developer agreements. Remember, we cannot and do not collect any information that you have not made publicly available. Your privacy settings on these platforms directly affect what information we can access. The graphic below illustrates how our Services work.

5 How We Use Collected Data

5.1 Primary Use

We use the collected Conversations and Personal Information to:

• 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

Our legal basis for processing is our legitimate interest in advancing understanding of rare and chronic diseases and improving healthcare outcomes.

5.2 Secondary Use

We may also use the data to:

• Improve our services
• Comply with legal and regulatory requirements
• Protect our legal rights and obligations

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

6 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

7 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 data, 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 in an effort to keep our community’s information safe.

8 International Data Transfers

Information we collect is stored in the United States. We implement technical, physical and organizational safeguards in an effort to protect your information, regardless of where it’s stored.

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.

9 Data Retention

We retain data collected through our social listening activities only for as long as necessary to provide our services and fulfill the purposes outlined in this policy. If you request that we delete your data, please be aware of the following:

• Our data comes from public sources. If your data remains public, we may recollect it in future social listening activities.
• To prevent future collection, you must remove your data from the original public sources (e.g., your social media posts or public forum comments).
• We will make reasonable efforts to delete your Personal Information from our current databases upon request. However, this may not extend to data already anonymized or aggregated into our insights and reports.
• We may be required to retain certain information, which may include your Personal Information, to comply with legal obligations, resolve disputes, or enforce our agreements.

If you have questions about our data retention practices or wish to request the deletion of your data, please contact us at privacy@trend.community.

10 Your Rights and Choices

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

• Opt-Out: You can request that we exclude your public posts from our analyses by contacting us at privacy@trend.community.
• Access: You can request information about any of your Personal Information we may have collected.
• Correction: You can ask us to correct any inaccurate Personal Information we hold about you.
• Deletion: You can ask us to delete any Personal Information we have associated with you.
• Restriction: You can ask us to restrict the processing of your Personal Information under certain circumstances.
• Data Portability: You can request a copy of your Personal Information in a structured, commonly used, and machine-readable format.
• Objection: You have the right to object to our processing of your Personal Information in certain circumstances.

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 Information.

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

11 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 use the Sites to knowingly collect Personal Information from children under the age of thirteen (13) years that requires parental notice and consent under the Children’s Online Privacy Protection Act (“COPPA”) without such parental consent. 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.

12 Updates to This Policy

We may update this policy periodically to reflect practice changes or for legal, operational, or regulatory reasons. We will notify you of any significant changes by posting a prominent notice on our website and updating the “Effective Date” at the top of this policy.

13 Contact Us

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