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HFA Champion Award Given to 4 Members of Congress

On June 17, 2015, we hosted our 2nd Annual Patient Fly-In in Washington, DC alongside an online Virtual Hill Day to gain support for bill HR 1600, The Patients’ Access to Treatment Act in the US House and Senate, and other issues like the ability for third-party non-profits to help make payments on behalf of patients, and improving access to skilled […]

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Dear Addy: Privacy Protection

Dear Addy, I rarely attend bleeding disorder related events because I want to protect my privacy. When I do attend it seems like every time I turn around people try to get me to complete a survey. Why is that? How can I protect my privacy? ~Under the Radar _______________________ Dear UR, Some companies, organizations, […]

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HFA ‘Champion Award’ Given to 4 Members of Congress

On June 18, 2014, we hosted a successful Hill Day in Washington, DC alongside an online Virtual Hill Day to gain support for bill HR 460, The Patients’ Access to Treatment Act in the US Senate, and other issues like the ability for third-party non-profits to help make payments on behalf of patients, and funding for the Centers for […]

CDC: Report on the Universal Data Collection (UDC) Project

From 2005-2009, federally funded Hemophilia Treatment Centers (HTCs) participated in the CDC’s Universal Data Collection (UDC) to help collect vital health information from about 27,000 patients in the bleeding disorders community. Report Highlights from the UDC Report This surveillance report focuses on UDC data collected during years 2005 through 2009. A total of 44,239 visits were made […]

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Dear Addy: Informed Consent

Dear Addy, The last time I took my son to his HTC I was asked to participate in a survey. I didn’t have time to read the consent form because my son wasn’t feeling well that day, so I asked if I could complete the survey at the next visit. The nurse told me I […]

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Dear Addy: Major Medical vs. Pharmacy Coverage

Dear Addy, A friend of mine in Texas told me her son’s factor was moved from major medical coverage to under pharmaceutical coverage. Their co-pay for factor went from $75 to $3,000 per prescription. They can’t afford this. Do I need to worry about this happening to my family? Scared of Pharmacy ____________________________ Dear SP, […]

Patient-Focused Drug Development Initiative Update

Dear Member Organizations, As you know, the FDA has recently embarked on a new Patient-Focused Drug Development Initiative, which will include convening 20 disease-specific public meetings to hear directly from patients about their perceptions of risk and benefit when it comes to new and existing treatments. FDA selected bleeding disorders as one of the disease […]

Assisting and Advocating for the Bleeding Disorders Community