Privacy policy

Lone Star Bleeding Disorders Foundation (LSBDF) Privacy Policy

Effective Date: October 5, 2026

1. Introduction

Lone Star Bleeding Disorders Foundation (“we,” “our,” or “us”) is committed to protecting the privacy of our website visitors, members, and donors. This Privacy Policy outlines the types of information we collect, how we use and protect it, and your rights regarding your personal information.

2. Information We Collect

We collect the following types of information:

• Personal Information: When you sign up for newsletters, register for events, make donations, or communicate with us, we may collect personal details such as your name, email address, phone number, mailing address, and payment information.

• Health-Related Information: When you join as a member, we ask about bleeding disorder diagnosis, severity, treatment center or other medical provider, and health insurance — for you and, where you choose to provide it, your spouse or partner and your minor children. A diagnosis is required to become a member. The remaining health questions, and all information about a spouse, partner or child, are optional. Section 3 explains how this information is used and who sees it.

• Non-Personal Information: We may collect non-personal data, including browser type, IP address, device information, and website usage statistics through cookies and analytics tools.

3. Health Information

Information about a bleeding disorder is sensitive, and we handle it with more care than the rest of what we collect. This section explains why we ask for it, what we do with it, and who sees it.

Why a diagnosis is required

Lone Star exists to serve people affected by bleeding disorders, and our programs and advocacy are built around specific conditions. We ask for a diagnosis when you join so that we can send you what is actually relevant to your household, and so that we can tell funders and legislators accurately how many Texas families live with each condition. If you would rather talk this through before joining, call us at 713.686.6100.

How we use it

• Advocacy and reporting: we compile aggregate, de-identified statistics about the bleeding disorders community for legislators, funders, and program partners.

• Programs and services: we connect members with resources, treatment centers, and support relevant to their household.

• Planning: we use what we learn about the community to decide which programs to run and where.

Who sees it

Lone Star staff. In addition, some of our programs are run jointly with another organization — for example the Women’s and Men’s Retreats, which are co-hosted with Texas Central Bleeding Disorders. If you register for a co-hosted program, we share that program’s registration list with the co-hosting organization, and that list may include health information you have given us. This sharing is limited to people who register for that program.

What we do not do

We do not sell your health information. We do not give pharmaceutical companies, insurers, employers, or home care companies a list of our members, and we do not share individually identifiable diagnosis, treatment, or insurance information with them. Companies that sponsor our events meet the members who choose to approach their table; they do not receive your record. Anything we publish, or provide to an outside partner for advocacy or reporting, is aggregated and de-identified so that no individual can reasonably be identified from it.

How long we keep it

We keep membership records in line with our Document Retention and Destruction Policy, which is published on this website. You may ask us to delete your health information sooner, and we will do so unless we are required to keep it.

Your consent

By submitting the membership form, you consent to our collecting and using this information as described in this section. You may ask us to correct or delete it at any time — see Section 8, “Your Rights and Choices.”

4. How We Use Your Information

We use the collected information to:

• Provide services, programs, and resources related to bleeding disorders.

• Compile aggregate, de-identified statistics about the bleeding disorders community for advocacy, grant reporting, and program planning (see Section 3).

• Process donations and event registrations.

• Send newsletters, advocacy updates, and other relevant communications.

• Improve our website and user experience.

• Comply with legal obligations and protect against fraud.

5. Data Sharing and Third Parties

We do not sell, trade, or rent your personal information. We may share your data with trusted third-party service providers who assist us in operating our website, processing transactions, or conducting outreach, provided they adhere to strict confidentiality agreements. We may also disclose your information if required by law.

Health information is subject to the additional protections described in Section 3. Outside Lone Star staff, it is shared only with an organization co-hosting a program you have registered for and only for that program, in aggregate and de-identified form, or where disclosure is required by law.

6. Cookies and Tracking Technologies

We use cookies and similar technologies to enhance website functionality and analyze user behavior. You may adjust your browser settings to disable cookies, but some features of the site may not function properly.

7. Data Security

We implement industry-standard security measures to protect your personal information from unauthorized access, loss, or misuse. However, no online transmission is 100% secure, and we cannot guarantee absolute security.

8. Your Rights and Choices

You have the right to:

• Access, correct, or delete your personal information, including health information.

• Opt out of marketing communications.

• Withdraw consent for data processing where applicable.

To exercise these rights, contact us at contactus@lonestarbleedingdisorders.org.

9. Children’s Privacy

Our website is not directed toward children, and we do not knowingly collect personal information directly from children. However, as part of the membership form, a parent or legal guardian may choose to provide information about their minor children — including name, birthday, gender identity, and bleeding disorder diagnosis — so that we can better understand and serve families affected by bleeding disorders. This information is optional. It is provided by the parent or guardian, not collected directly from the child, and it is subject to the same protections described in Section 3. A parent or guardian may review, correct, or request deletion of their child’s information at any time by contacting us using the information in Section 11.

10. Changes to This Privacy Policy

We may update this Privacy Policy from time to time. Changes will be posted on this page with the updated effective date. We encourage you to review this policy periodically.

11. Contact Us

If you have any questions or concerns about this Privacy Policy, please contact us at:

Lone Star Bleeding Disorders Foundation

5600 Northwest Central Dr, Unit 140

contactus@lonestarbleedingdisorders.org

713.686.6100