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Dear Addy: HFA Community Research Portal

Dear Addy, What is the HFA Community Research Portal and why is it important to me? Sincerely, Research Meets Advocacy Dear Research, The HFA Community Research Portal is an exciting new research project that will provide individuals with bleeding disorders the chance to directly engage in meaningful research projects. The HFA Community Research Portal is […]

Industry News

Genentech Announces Interim Results from Phase III HAVEN 2 Study

On April 16, 2017 Genentech announced interim results from the Phase III HAVEN 2 study evaluating emicizumab prophylaxis in children less than 12 years of age with hemophilia A and inhibitors to factor VIII. According to this Genentech’s press releases, “interim analysis after a median of 12 weeks of treatment, emicizumab prophylaxis showed a clinically meaningful reduction in the […]

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Infusing Love: A Letter to A Mentor

  Dear Corey, Max was 2 or 3 years old when I first met you. I had been told about this conference happening in Sturbridge, Massachusetts. I really didn’t even know what it was for, but at that point I was desperate to be connected with anyone who had hemophilia. It was a little shocking […]

A Patient’s Perspective on a Fresh Osteoarticular Allograft

By: Christopher Quesenberry Having a rare condition like hemophilia has never held me back from pursuing an active lifestyle. The demands of maintaining a high level of activity, however, ultimately resulted in joint failure. My right knee has been considered a “target joint” since I was in the fifth grade. By the time I reached […]

Infusing Love: In Search of Stress? No!

Stress is defined as a state of mental or emotional strain or tension resulting from adverse or very demanding circumstances. As parents we know stress well. It almost becomes like a good old friend that you have reconnected with. It seems like we can’t escape it but, we can only minimize it. Raising a child […]

Dear Addy: Share Your Story

Dear Addy, I’ve been following the news about the Affordable Care Act. What else can the bleeding disorders community do to ensure access to quality health care? Signed, Energized Advocate Dear Energized, Advocacy is most successful when people share their personal story about how legislation affects them. Across political parties, Americans are reaching out to […]

Infusing Love: Radical Change

  When my son Thomas came into the world, he radically changed my knowledge base about hemophilia and other bleeding disorders. As this March comes to an end, I’ve been thinking about how far we’ve come as a family since Thomas’s diagnosis. I decided to look for the original email we sent to friends and […]

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Infusing Love: This Is Us

  My mighty warrior, Caeleb, still has an inhibitor. His Bethesda Unit (BU) is less than one and his half-life is less than four hours, so we have a ways to go. His BU has reached zero a few times, and I was thrilled! It was a victory, and when you live with an inhibitor […]

Patients’ Genetic Privacy Threatened by H.R. 1313

Congress is currently considering legislation that would undermine patient privacy and workplace non-discrimination protections for individuals and families affected by genetic conditions. This legislation, the Preserving Employee Wellness Programs Act (H.R.1313) was approved by a House committee earlier this month. Under existing law, an employer can run a “voluntary” workplace wellness program – and can […]

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Dear Addy: Nation’s Blood Supply

Dear Addy, How is the nation’s blood supply managed, and how do we know if it’s safe? Sincerely, Searching for the Best Blood Dear Searching, The US blood supply system is managed by a number of major organizations, including federal agencies. They oversee two types of blood collection activities: (1) the collection of the cellular […]

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