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Volunteer Spotlight: Award Winner Unites Community

In conjunction with Volunteer Appreciation Month, we are highlighting volunteers who help to make the bleeding disorders community inclusive and informative. Today, we are proud to recognize one of our recent award winners at our 2017 Symposium, Darcy Zwier! The “It Takes a Village” award is provided to an individual who goes above and beyond in […]

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Infusing Love: Virtual Hugs

  I need to send a big hug and thank you to all the bleeder moms who have supported me. I thank you for the endless support you continue to give me. But I especially need to send a special hug to the one mom who has been there to pick me up these last […]

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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

Bioverativ Strengthens Commitment To Women With Bleeding Disorders

Bioverativ joins the global hemophilia community in recognizing World Hemophilia Day and supporting the millions of women and girls impacted by bleeding disorders through this year’s theme, “Hear Their Voices.” Excerpted from the press release: “Bioverativ shares the World Federation of Hemophilia’s commitment to understanding the needs of all members of the bleeding disorders community, including […]

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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 […]

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 […]

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Infusing Love: ¡Sé agradecido!

No importa en la circunstancia en que nos encontremos siempre tenemos una razón por la cual estar agradecidos.   A lo largo de mi carrera como maestra de escuela elemental por más de 15 años y ahora como coordinadora de programas en HFA, he tenido la oportunidad de conocer a muchas personas. Maravillosas personas con características […]

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