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FDA Releases “Voice of the Patient” Summary from Patient-Focused Drug Development Initiative

In September 2014, the U.S. Food and Drug Administration hosted a public meeting as part of it’s Patient-Focused Drug Development initiative, a 5 year initiative to learn more from patients across a variety of disease and disorders. We were proud to be a part of this meeting and provided support to several of the patient […]

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Infusing Love: Away He Goes

During summer time, most parents feel they have some time before they have to think about an upcoming school year. However, if you are a parent of a child with hemophilia that just graduated from high school who is on his/her way to college, your worries start long before graduation. Our son Chris wanted to […]

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Dear Addy: Advocacy in Rural Communities

Dear Addy, I live in rural Wyoming and we do not have a hemophilia treatment center (HTC) in my state. How do I advocate for myself and better treatment at my local doctor’s office? Sincerely, Western Advocate ______________________________________________________________________________________ Dear Western, Whether you live in a rural or metro area without an HTC, or in a […]

Industry News

Kedrion Announces Voluntary, Temporary Hold on Koate-DVI

Kedrion Biopharma provided the following announcement today: Koate®-DVI Summer Supply Statement Kedrion Biopharma has placed a voluntary, temporary hold on further shipments of Koate-DVI until approximately the September timeframe. The company is working to restore supplies of Koate-DVI as soon as possible so that it can be made available to patients who require it. This is being […]

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Infusing Love: More than Max’s Mom

I am a modern day success story. I never thought I could have kids. Issues that I now know were caused from my own low factor levels had doctors telling me I “would probably never be able to have children.” I set out to live my life as such. You know those lists of “have […]

Intern Introspective: Through Our Eyes

Earlier this summer, we introduced you to Eric and Camila, our summer Policy Interns. They have been busy all over DC, attending Congressional hearings, executive briefings, and much more. Recently, they got to experience first-hand the planning and execution of our 3nd Annual Patient Fly-In. Below is their take on the week. _________________________________________________________________________________ What was […]

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Infusing Love: Paying It Forward

Bleeding disorders like hemophilia can mean days of isolation, worry, and pain. This life is stressful, but sometimes days are filled with hope and promise. Thankfully, we have had many of those hopeful and helpful moments. When Benny was a baby we had the good fortune to attend a local community picnic and meet a […]

Update #4: MASAC Issues Recommendation on SIPPET

On June 28, 2016, the National Hemophilia Foundation’s Medical and Scientific Advisory Committee (MASAC) issued a recommendation following the published results of the Survey of Inhibitors in Plasma Products Exposed Toddler (SIPPET) The SIPPET study was published in the New England Journal Of Medicine (NEJM) in May 2016. The full text of the SIPPET study is available for a […]

Industry News

uniQure Announces Data from Phase I/II AMT-060 Clinical Trial

Note: The below is an edited version of a press release by UniQure. The original release can be read in it’s entirety here. On June 11, 2016, uniQure N.V. announced that additional data from its Phase I/II clinical trial of AMT-060 in hemophilia B patients were presented at the 21st Congress of the European Hematology Association (EHA) in Copenhagen, […]

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 […]

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Assisting and Advocating for the Bleeding Disorders Community