Leptomeningeal Cancer Foundation Consumer Health Data Privacy Policy
LEPTOMENINGEAL CANCER FOUNDATION
CONSUMER HEALTH DATA PRIVACY POLICY
Effective: November 2, 2026
This Consumer Health Data Privacy Policy (this “Policy”) explains how the Leptomeningeal Cancer Foundation (“LMCF,” “we,” “us,” or “our”) collects, uses, and shares “consumer health data,” as that term is defined by applicable state laws, including laws in Washington and Nevada. Please read it carefully.
This Policy applies to consumer health data we collect on our website, www.lmcancer.org, and anywhere else this Policy is posted or linked, including when we collect information offline where this policy is referenced. This Policy adds to our Privacy Policy and applies only to consumer health data as defined under applicable law, as described above. If this Policy and our Privacy Policy differ on how we handle consumer health data, this Policy controls.
By giving us consumer health data, or by using our website and services, you agree that we may collect, use, and share your consumer health data as described in this Policy. If you do not agree, please do not provide consumer health data to us.
- What is consumer health data?
Consumer health data generally means personal information that is linked or reasonably linkable to you and that identifies your past, present, or future physical or mental health status. Because LMCF focuses on a single serious disease, some information may count as consumer health data even if it seems simple. For example, telling us you are a patient, or sharing a loved one’s diagnosis, may reveal health information.
- Consumer health data we may collect
The consumer health data we collect from or about you, if any, depends on how you interact with us and the choices you make. It may include:
- Information about your health conditions, symptoms, status, diagnoses, testing, or treatments (including surgeries, procedures, medications, or other interventions). For example, we collect this information if you tell us that you have been diagnosed with leptomeningeal cancer or describe your experience on a form, as part of a survey, or when you contact us.
- Inferences we may make about your health from other information you provide. For example, if you select “Patient” when you sign up for our newsletter, we may infer that you have leptomeningeal cancer.
- Information that identifies a consumer seeking health care services. For example, we may collect this information if you contact us and ask for resources in your area.
- Other information that identifies your past or present health status.
- Sources of consumer health data
We may collect consumer health data:
- Directly from you, such as when you fill out a form, sign up for our newsletter, make a donation, take a survey, or contact us.
- From people who submit information about you, such as a family member, friend, or caregiver who submits a slideshow entry or helps create a tribute page. If you give us information about another person, you confirm that you have the authority to do so.
- From our service providers, such as the platform that runs our donation page, our payment processor, our email service provider, and survey tools.
- Automatically, through cookies and similar technologies when you visit our website or open our emails. For example, this may show that you visited pages about treatment or patient support, and this information may in some instances be considered consumer health data. For more information, please see our Privacy Policy.
We may combine information we receive from others with information you give us, and the combined information may in some cases be considered consumer health data.
- Purposes for which we may collect and use consumer health data
We may use consumer health data to:
- Send you newsletters and information that fit your relationship to leptomeningeal cancer;
- Respond to your requests for support and connect you with resources;
- Understand the needs of our community and improve our programs through surveys;
- Process donations, acknowledge tribute and memorial gifts, and publish tribute pages that you or your family have asked us to create;
- Respond to your questions and communicate with you;
- Protect the security of our website and prevent fraud or other harmful activity;
- Comply with the law and our legal obligations; and
- Create aggregated or de-identified information, which we may use for any lawful purpose.
We will ask for your consent where the law requires it, and we may use consumer health data for other purposes that you agree to.
- How we may share consumer health data
We may share consumer health data for the purposes described above, or as needed to complete something you have asked us to do. We may also disclose it:
- To service providers that provide business, professional, or technical support functions for us, help us operate our organization and our website, or administer activities on our behalf.
- To comply with law, or to respond to subpoenas, judicial processes, or government requests and investigations, or in connection with an investigation on matters related to public safety, as permitted by law, or otherwise as required by law.
- To protect the security of our website, servers, network systems, databases, and organization.
- To protect our rights and our website, including to look into possible fraud or violations of our Terms of Use.
- If our organization changes, such as if we merge with or transfer our assets to another organization.
- With your consent.
- Third party collection of consumer health data
Some third parties, such as analytics providers, may collect consumer health data from over time and across different websites, depending on your browser, browser add-ons, and associated permissions you set on your devices. For more information and to manage your choices, please see our Privacy Policy and the cookie settings on our website.
- Your privacy rights
Depending on where you live, and subject to some legal limits, you may have the right to:
- Confirmation and access. You may request to confirm whether we collect or share consumer health data about you. You may also request to access such consumer health data, including a list of all third parties and affiliates with whom LMCF has shared the consumer health data and an active email address or other online mechanism that you may use to contact these third parties.
- You may request that we delete any of your consumer health data collected from you and retained by us.
- Withdraw Consent. You may request to withdraw consent to LMCF’s collection and sharing of consumer health data concerning you.
- Review and Revise: You may request to review and/or revise your consumer health data.
We may deny a request if we reasonably need to keep the information to prevent or respond to security incidents, fraud, harassment, or illegal activity, to protect the security of our systems, or to investigate or report illegal activity. We will not treat you differently for exercising your rights.
- Exercising your rights
To make a request, please email us at info@lmcancer.org and include “Consumer Health Data Request” in the subject line. Please tell us which right you would like to use and give us enough detail to respond. We may ask you some questions to confirm your identity before we respond.
If we deny your request, we will explain why and tell you how to appeal. To appeal, please follow the steps in our response to you.
- Changes to the LMCF Consumer Health Data Privacy Policy
We reserve the right, at our sole discretion, to change, modify, add, remove, or otherwise revise portions of this Policy at any time. When we do, we will post the updated Policy on our website. Your continued use of our services following the posting of changes to this Policy means you accept these changes.
- Contact information
If you have questions about this Policy or how we handle consumer health data, please email us at info@lmcancer.org or write to us at:
Leptomeningeal Cancer Foundation
1495 Canyon Blvd., #460
Boulder, Colorado 80302