Privacy policy

Who we are

The Texas Bleeding Disorders Coalition is an unincorporated collaborative advocacy network operated jointly by two member organizations, Texas Central Bleeding Disorders and the Lone Star Bleeding Disorders Foundation. We are not a separate legal entity, and we are not a healthcare provider.

What we collect

When you use our contact form, we receive your first name, last name, email address, subject line, and whatever you write in the message. That is all we ask for. There is no account to create and nothing else to fill in.

When you simply visit, our website platform records ordinary traffic information such as which pages were viewed and roughly where in the world the visit came from. We use it to see which pages are useful. It does not tell us who you are.

What we do with it

We read your message and reply. Messages reach a real person at one of our member organizations rather than a shared inbox, and may be seen by others at those organizations when answering you calls for it.

We do not sell or rent your information. We do not share it with advertisers, data brokers, political campaigns, or pharmaceutical companies. Writing to us does not sign you up for a newsletter or a mailing list.

Health information

People sometimes tell us about their diagnosis or their family's when they write. You are welcome to, but you are never required to, and you should share only what you are comfortable sharing.

Please do not send medical records, insurance documents, or test results through this website. We are an advocacy network, not a clinic. This site is not a secure medical channel and is not covered by HIPAA. If you need to send documents to someone, ask us first and we will point you to the right place.

Your story stays yours

Personal stories are how this community moves legislators, and we are grateful every time someone shares one. But a story you send us privately stays private.

We will not publish your name, your story, or your photograph without asking you first and getting a clear yes. That applies to our website, our social media, printed materials, and anything we hand to a legislative office. If you agree and later change your mind, tell us and we will take it down.

Cookies and other services

Our website runs on Squarespace, which sets a small number of cookies — one for security and two that count visits. Our language selector is provided by Weglot, which needs to read the page in order to translate it. Our contact form uses a Google spam check to keep out automated junk.

Where we embed video, we use YouTube's privacy-enhanced player, which does not set advertising cookies unless you actually play the video. Each of these companies has its own privacy policy that governs what it does with what it sees.

You can block or delete cookies in your browser settings. Nothing on this site will stop working if you do.

How long we keep things

We keep contact form messages as long as we need them to answer you and to keep a record of the work. We do not have a use for old messages and we are glad to delete yours on request.

Children

Bleeding disorders affect families, and children are part of this community. But this website is written for adults, and we do not knowingly collect information from anyone under 13. If your child has sent us something and you would like it removed, tell us and we will remove it.

What you can ask us to do

Write to us through the contact form and you can ask us to tell you what we hold about you, correct it, or delete it. We will do it, and we will not ask why.

Changes

If we change how any of this works, we will change this page and update the date at the top.

Reaching us

Everything above runs through our contact form. It is the way to reach the Coalition, including about anything on this page.