Privacy Policy
Last Updated: August 28, 2026
Generation Lyme, Inc. (“Generation Lyme,” “we,” “us,” or “our”) respects your privacy. This Privacy Policy explains how we collect, use, share, and protect information when you visit genlyme.org, interact with our online services, register for programs or events, make a donation, communicate with us, or otherwise interact with Generation Lyme online (collectively, the “Site”).
This Privacy Policy applies to Generation Lyme’s Site and online services. Third-party websites, platforms, and services may have their own privacy policies and practices.
Information We Collect
The information we collect depends on how you interact with Generation Lyme.
Information You Provide to Us
You may provide information to us when you:
subscribe to emails or newsletters;
register for a Meet-Up, event, or other program;
contact Generation Lyme;
volunteer or express interest in volunteering;
submit a story, testimonial, photograph, video, or other content;
make a donation;
participate in a survey or other community activity; or
otherwise provide information through the Site.
This information may include your name, email address, contact information, and other information you choose to provide.
Because Generation Lyme serves people affected by Lyme disease and other tick-borne diseases, information you voluntarily provide may sometimes relate to your health, experiences with illness, or relationship to someone affected by tick-borne disease. We encourage you to share only the information you are comfortable providing and that is relevant to your interaction with us.
Donations and Payment Information
When you make a donation or other payment, payment information may be collected and processed by a third-party payment processor. Generation Lyme may receive information associated with the transaction, such as your name, contact information, donation amount, and transaction details.
Generation Lyme does not intend to collect or store complete payment-card information when payment processing is handled by a third-party provider.
Information Collected Automatically
When you visit our Site, we and our service providers may automatically collect limited technical and usage information about how the Site is accessed and used.
We use this information to operate and secure the Site, understand how visitors use it, and improve our content, resources, and services.
This information may be collected through cookies and similar technologies.
How We Use Information
Generation Lyme may use information to:
operate, maintain, secure, and improve the Site;
provide programs, resources, and services you request;
administer Meet-Ups, events, volunteer activities, and other programs;
communicate with you;
send newsletters, program updates, and other communications;
process and acknowledge donations;
respond to questions and requests;
understand how people use our Site and resources;
improve our programs and community offerings;
maintain appropriate organizational records;
comply with legal obligations; and
protect the rights, safety, and interests of Generation Lyme, our community, and others.
Email Communications
If you subscribe to Generation Lyme emails, we may send you newsletters, program updates, educational information, fundraising communications, and other Generation Lyme news.
You may unsubscribe from marketing emails at any time using the unsubscribe link included in those communications.
We may still send administrative or transactional communications when necessary in connection with a registration, donation, program, request, or other interaction you initiated.
Meet-Ups, Events, and Community Programs
When you register for or participate in a Generation Lyme Meet-Up, event, or other program, information may be processed by Generation Lyme and by third-party services we use for registration, scheduling, videoconferencing, communications, or other program functions.
Participation in a community program may involve voluntarily sharing information with other participants. Please use your own judgment when deciding what personal information you wish to share in a group or community setting.
Generation Lyme’s Community Guidelines, Meet-Up Terms, releases, and other program-specific policies or agreements may also apply to particular programs.
Patient Stories and Submitted Content
Your story is yours. Generation Lyme does not claim ownership of your lived experiences, health history, or personal story.
If you choose to share a story, testimonial, photograph, video, recording, or other content with Generation Lyme for publication or other use, we may ask you to sign a separate release or permission agreement. That agreement explains how Generation Lyme may use the content you provide or help us create.
We may collect and retain information associated with your submission as reasonably necessary to manage the content, document your permissions, communicate with you, and use the content in accordance with the applicable agreement.
Cookies and Analytics
Generation Lyme may use cookies and similar technologies to help the Site function, understand how visitors use it, measure performance, and improve the visitor experience.
Some of these technologies may be provided by third-party service providers.
Where privacy controls are available on the Site, you may use them to manage certain cookies or similar technologies. You may also be able to manage cookies through your browser settings. Disabling certain technologies may affect how portions of the Site function.
How We Share Information
Generation Lyme does not sell your personal information.
We may share information in the following circumstances.
Service Providers
We may use service providers to support functions such as website hosting, email communications, event registration and scheduling, videoconferencing, analytics, donations and payment processing, data storage, and other organizational operations.
These providers may process information in connection with the services they provide to Generation Lyme and are subject to their own applicable terms, privacy practices, and contractual obligations.
When You Choose to Share Information
Some Generation Lyme programs provide opportunities to interact with other community members. Information you voluntarily share in those settings may be visible to other participants.
If you give Generation Lyme permission to publish your story, image, testimonial, or other content, we may share that content as permitted by the applicable release or agreement.
Legal, Security, and Safety Reasons
We may disclose information when we reasonably believe disclosure is necessary to:
comply with applicable law, regulation, legal process, or lawful government request;
protect the rights, property, or safety of Generation Lyme, our community, or others;
investigate or prevent fraud, misuse, security incidents, or unlawful activity; or
establish, exercise, or defend legal claims.
Organizational Changes
If Generation Lyme undergoes a restructuring, merger, transfer of assets, dissolution, or similar organizational change, information may be transferred as part of that process as permitted by law.
With Your Direction or Consent
We may share information when you direct us to do so or otherwise consent to the disclosure.
Third-Party Websites and Services
Our Site may contain links to or integrations with websites, directories, scheduling tools, videoconferencing platforms, donation processors, social media services, and other services operated by third parties.
When you interact with a third-party service, that provider may collect information directly from you. Its collection and use of information are governed by its own privacy policy and terms.
Generation Lyme does not control the privacy, security, or data practices of third-party services.
Data Retention
Generation Lyme retains personal information for as long as reasonably necessary for the purposes for which it was collected, to operate our programs and organization, maintain appropriate records, comply with legal or financial obligations, resolve disputes, and protect our legitimate interests.
Retention periods may vary depending on the type of information and why it was collected.
Data Security
Generation Lyme takes reasonable administrative, technical, and organizational measures designed to protect personal information against unauthorized access, loss, misuse, alteration, or disclosure.
No website, electronic transmission, or storage system can be guaranteed to be completely secure.
Your Choices and Requests
You may contact Generation Lyme to ask about, correct, or request deletion of personal information you have provided to us, subject to applicable law and legitimate organizational, legal, financial, and recordkeeping requirements.
You may unsubscribe from marketing emails using the unsubscribe link included in those communications.
Depending on where you live, applicable law may provide additional privacy rights.
Privacy requests may be sent to info@genlyme.org.
Children and Young People
Generation Lyme serves people of different ages and may offer programs in which young people participate.
Our Site is intended for a general audience and is not specifically directed to children under 13. We do not knowingly seek to collect personal information online directly from children under 13 without appropriate permission.
If you believe a child under 13 has provided personal information to Generation Lyme without appropriate permission, please contact us at info@genlyme.org so we can review the situation and take appropriate action.
Additional requirements, permissions, or agreements may apply when minors participate in certain Generation Lyme programs or activities.
International Visitors
Generation Lyme is based in the United States and serves a community that includes people around the world.
If you access the Site or provide information from outside the United States, your information may be transferred to, stored in, or processed in the United States or other countries where Generation Lyme or its service providers operate. Privacy and data-protection laws in those jurisdictions may differ from those where you live.
Changes to This Privacy Policy
We may update this Privacy Policy as our Site, programs, technologies, practices, or legal obligations change.
When we make changes, we will update the “Last Updated” date above. We may provide additional notice of material changes when appropriate.
Contact Us
If you have questions about this Privacy Policy or Generation Lyme’s privacy practices, contact us at:
Generation Lyme, Inc.
322 West 52nd Street, PO Box 337
New York, NY 10019
info@genlyme.org