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Dear Addy: Legislative Day Participation and Follow-up

Dear Addy, I recently participated in a state legislative day and left feeling great about what we accomplished. How do I maintain this energy and continue to advocate for the issues I am concerned about? -Eager Advocate Dear Eager, Congratulations on participating in your state legislative day. This is an important way to advocate for […]

HFA Champion Award Given to 2 Members of Congress

On June 22, 2016, we hosted our 3rd 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 and for HR 3742, The Access to Marketplace Insurance Act, other issues like the ability for third-party non-profits to help make payments on behalf of patients, and improving […]

Infusing Love: Because I am a Mom

Being the mom of a child with a bleeding disorder, I am used to questions and comments from others. More often than not, they are comical and provide a bit of relief, but there is one comment that seems to be set on repeat, and I am overwhelmed by it. The comment regularly comes after […]

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Intern Introspective: Introducing Camila

Two weeks ago we introduced you to one of our Policy & Government Relations intern’s, Eric. This week, we are pleased to feature our second summer intern, Camila. _______________________________________________________________________ What school do you attend? What is your major? I am a rising senior at the University of Richmond in Richmond, Virginia. I am completing a […]

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Infusing Love: It’s Perfect for Us

This past April my husband, Joe, and I celebrated our 22nd wedding anniversary. Statistically speaking, I guess you could say we are one of the lucky ones. Throw in the fact we have three kids with chronic illness, now we are defying the odds. By no means do we have a perfect marriage, but what […]

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Update #3: SIPPET Study Released

On May 26 2016, the New England Journal Of Medicine (NEJM) published the results of the Survey of Inhibitors in Plasma Products Exposed Toddler (SIPPET) study. Investigators found that in a randomized study, when previously-untreated patients (PUPs) were treated with recombinant factor VIII, there was an 87% higher incidence of inhibitor development than when treated with plasma-derived factor VIII. […]

Industry News

Spark Therapeutics Announces Updated Data from Hemophilia B Trial

Note: The below is an edited version of a press release by Spark Therapeutics. The original release can be read in it’s entirety here. PHILADELPHIA, June 13, 2016 - Spark Therapeutics announced today updated results of the first cohort from the ongoing Phase 1/2 clinical trial of SPK-9001, the lead investigational candidate in its SPK-FIX program, which is being studied for the […]

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Gene Editing Removes HIV From Human T-Cells

Note: Scientific Reports released an article outlining the results of a study by researchers at Temple University offers promising new advancements toward a cure for HIV.  Using specialized gene-editing,  researchers were able to effectively and safely eliminate HIV-1 from the DNA of human T-cells. This study is especially promising in that there appear to be very little to no side […]

Dear Addy: National Safety Month

Dear Addy, My son is about to start summer vacation. While he is excited, I’m concerned about all of the activities he will be doing. It seems everything he enjoys involves risking a bleed. How do I monitor my child’s safety while allowing him to have fun this summer? Signed, Anxious About Summer Break Dear […]

Infusing Love: Superheroes Need Rest Too

Ask for help! It seems easy to do, but it takes a lot of effort. If someone would have told me, as a hemo mom, “You need to ask for help!”I could have saved myself a few unnecessary headaches. I recall a time when my oldest son, Marques, was in the hospital with a bad […]

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Assisting and Advocating for the Bleeding Disorders Community