Lymphatic Education & Research Network (LE&RN)
Privacy Policy
Effective Date: July 23, 2026
The Lymphatic Education & Research Network (“LE&RN,” “we,” “us,” or “our”) is a 501(c)(3) nonprofit organization dedicated to fighting lymphatic diseases through education, research, and advocacy. We respect your privacy and are committed to protecting the personal information you share with us.
This Privacy Policy describes the information we collect, how we use and protect it, and your choices. It applies to our website (lymphaticnetwork.org and related pages), the LE&RN Resource Center, events, donations, registries, communications, and other interactions with us.
1. Information We Collect
Information You Provide Voluntarily
- Contact and demographic information (name, email, phone, postal address, state/country, etc.) when you subscribe to emails, register for events, join a registry, make a donation, contact us, or use other services.
- Financial information (credit/debit card details) solely when you make a donation. Payment data is processed and stored securely by our payment processors; LE&RN does not retain full card numbers.
- Information submitted through the LE&RN Resource Center (online form, voicemail, phone, or other channels). This may include your name and contact details, a description of your (or a loved one’s) lymphatic condition or related concerns, questions about care or resources, location (e.g., state), and any other details you choose to share. This can include sensitive health-related information.
- Other information you voluntarily provide in surveys, feedback, or correspondence.
Information Collected Automatically
When you visit our website we may collect technical data such as IP address, browser type, device information, pages visited, and referring URLs through cookies, analytics tools, and similar technologies. You can control cookies through your browser settings.
We do not require you to provide personal information simply to browse most of our public website content.
2. How We Use Your Information
We use the information we collect to:
- Respond to your inquiries and provide educational information, resources, and referrals through the Resource Center and other programs.
- Operate, maintain, and improve our website, programs, events, and services.
- Process donations and send related acknowledgments and tax information.
- Send communications you have requested or that relate to your involvement with LE&RN (you can opt out of non-essential messages).
- Conduct internal analysis, quality improvement, staff training, and program evaluation.
- Comply with legal obligations and protect the rights, safety, and property of LE&RN, our community, and others.
De-Identified and Aggregated Information
We may remove personal identifiers from the information you provide (including Resource Center inquiries) so that it can no longer reasonably be linked to you. We then aggregate this de-identified data to understand and improve our work.
Examples of metrics and insights we generate and use internally (and may share in summary form) include:
- Total individuals / patients served
- Number of new patients or new inquiries
- Number of recommendations or referrals provided
- Geographic reach (e.g., number of states or regions represented)
- Number of forms or inquiries submitted
- Average response time
- Categories or themes of questions received
- How we are responding to those questions
- Other high-level operational and impact measures
This aggregated, de-identified information helps us improve services, report on our impact to our Board, donors, funders, and the public, and demonstrate the scope of need and the work we do. It never identifies any individual.
We do not sell, rent, or trade your personal information.
3. Sharing of Information
We share personal information only in limited circumstances:
- With service providers and vendors who perform services on our behalf (e.g., website hosting, CRM/donor systems, form processors, email platforms, payment processors, phone systems). These parties are contractually required to protect the information and use it only for the services they provide to us.
- With your consent or at your direction.
- When required by law, legal process, or to protect rights, safety, or property.
- In connection with a merger, reorganization, or similar organizational transaction (in which case the information would remain subject to privacy protections).
- Aggregated or de-identified information that does not identify individuals, including the metrics and summaries described above, which we may share publicly, with donors, partners, media, or government entities as part of our educational and advocacy mission.
We do not share identifiable health-related information from Resource Center inquiries for marketing or list-rental purposes.
4. Confidentiality of the LE&RN Resource Center
The Resource Center is a free, confidential educational support service. Information you share is accessible only to authorized LE&RN staff members who need it to respond to your inquiry or for necessary administrative, quality, or legal purposes.
Important: The Resource Center and LE&RN do not provide medical advice, diagnosis, treatment recommendations, insurance advice, or financial assistance. Information is for educational purposes only. Always consult qualified healthcare professionals for personal medical decisions. In a medical emergency, call 911 or your local emergency number.
5. Data Security and Retention
We implement reasonable technical, administrative, and physical safeguards appropriate to the nature of the information to protect it against unauthorized access, loss, or disclosure. No method of transmission or storage is 100% secure.
We retain personal information only as long as needed for the purposes described in this Policy, to comply with legal or reporting obligations, or to resolve disputes. When no longer needed, we securely delete or de-identify it.
6. Your Choices and Rights
You may:
- Update or correct your contact information.
- Opt out of marketing or non-essential emails (unsubscribe link or contact us).
- Request access to, correction of, or deletion of personal information we hold about you, subject to certain legal exceptions and our need to retain records for legitimate purposes (e.g., donation records).
- Limit certain communications.
To exercise these rights or ask questions, contact us using the information below. We will respond within a reasonable time.
If you are a California resident or live in a jurisdiction with additional privacy rights, you may have further rights under applicable law; please contact us to exercise them.
7. Children’s Privacy
Our services are not directed to children under 13. We do not knowingly collect personal information from children under 13 without appropriate parental consent. If you believe we have collected such information, please contact us so we can delete it.
8. Third-Party Links and Services
Our website may contain links to third-party sites or services. This Policy does not apply to those third parties. We encourage you to review their privacy policies.
9. Changes to This Policy
We may update this Privacy Policy from time to time. The Effective Date at the top will indicate the latest version. Continued use of our services after changes constitutes acceptance of the updated Policy. Material changes will be highlighted as appropriate.
10. Contact Us
If you have questions, requests, or concerns about this Privacy Policy or our privacy practices:
Lymphatic Education & Research Network
154 West 14th Street, 2nd Floor
New York, NY 10011
Phone: (516) 625-9675
Resource Center / Patient Support Line: 1-855-378-8163
Email: lern@lymphaticnetwork.org
Website Disclaimer (recommended to keep or place near the Resource Center) The information on this website and provided through the Resource Center is for educational purposes only and is not a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.