Dear Addy: CHOICE

Dear Addy,
I keep seeing all of these Facebook posts and Tweets about the CHOICE Project. What is it and why does it matter if I take part?
Signed,
Need-to-Know

Dear Need-to-Know,
Glad you asked. CHOICE (Community Having Opportunity to Influence Care Equity) is a project driven by HFA and supported by the Centers for Disease Control and Prevention (CDC). CHOICE collects information from bleeding disorder patients in the US through an online and paper-based survey in English or Spanish.
This survey collects information regarding health experiences of people who have a doctor-diagnosed bleeding disorder and do not receive care at a federally-funded hemophilia treatment center (HTC). HFA’s goal for the CHOICE Project is to put the survey results to work to improve the lives of those in the bleeding disorders community.

Please don’t wait to take the survey. Anyone with a bleeding disorder and any carrier is welcome to take the survey. It closes on Friday, July 31th. The more data we collect the better we can understand the needs of the entire bleeding disorder community, those who receive their care at an HTC and those who don’t.
After the survey closes, HFA-together with the CDC- will begin the important job analyzing data collected from survey participants. We will report these findings directly to the community. HFA will use what it learns to improve its programs and advocacy efforts as well as to support additional research.
Sincerely,
Addy

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HFA frequently receives questions from the bleeding disorders community related to advocacy issues. The questions often impact the entire community. In an effort to reach the largest audience possible with our responses to these widely applicable questions, HFA developed “Dear Addy.” Questions submitted to this column are edited in order to protect privacy and should be considered educational only, not individual guidance.