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News & Perspectives

Infusing Love: Away He Goes

July 13, 2016

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 […]

Dear Addy: Advocacy in Rural Communities

July 11, 2016

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鈥檚 office? Sincerely, Western Advocate ______________________________________________________________________________________ Dear Western, Whether you live in a rural or metro area without an HTC, or in a […]

Kedrion Announces Voluntary, Temporary Hold on Koate-DVI

July 6, 2016

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

Infusing Love: More than Max鈥檚 Mom

July 6, 2016

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 鈥渨ould probably never be able to have children.鈥 I set out to live my life as such. You know those lists of 鈥渉ave […]

Take a Hike! Safety Tips for the Trail

July 1, 2016

It is important for individuals with bleeding disorders to participate in some form of physical activity.聽 Being physically active helps to strengthen one鈥檚 muscles, bones and joints.聽 One of the many benefits of having a strong healthy body can be a reduction in the number of bleeding episodes an individual might experience. Of equal importance […]

Intern Introspective: Through Our Eyes

July 1, 2016

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 […]

Infusing Love: Paying It Forward

June 29, 2016

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

June 28, 2016

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

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

June 28, 2016

Note: The below is an edited version of a press release by UniQure.聽The original release can be read in it’s entirety聽here. On June 11, 2016,聽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聽Congress of the European Hematology Association (EHA) in Copenhagen, […]

Dear Addy: Legislative Day Participation and Follow-up

June 26, 2016

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

June 24, 2016

On June 22, 2016, we hosted our 3rd Annual Patient Fly-In in Washington, DC聽alongside an online聽Virtual Hill Day聽to gain support for bill聽HR 1600, The Patients鈥 Access to Treatment Act聽and for HR 3742, The Access to Marketplace Insurance Act, other issues like聽the ability for third-party non-profits to help make payments on behalf of patients, and improving […]

Infusing Love: Because I am a Mom

June 22, 2016

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 […]

Intern Introspective: Introducing Camila

June 17, 2016

Two weeks ago we introduced you to one of our Policy & Government Relations intern鈥檚, 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 […]

Infusing Love: It鈥檚 Perfect for Us

June 15, 2016

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 […]

Update #3: SIPPET Study Released

June 14, 2016

On May 26 2016, the聽New England Journal Of Medicine (NEJM)聽published the results of the聽Survey of Inhibitors in Plasma Products Exposed Toddler (SIPPET)聽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. […]

Spark Therapeutics Announces Updated Data from Hemophilia B Trial

June 14, 2016

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

Gene Editing Removes HIV From Human T-Cells

June 14, 2016

Note:聽Scientific Reports聽released an article outlining the results of a study聽by researchers at Temple University offers promising new advancements toward a cure for HIV. 聽Using specialized gene-editing, 聽researchers were able to聽effectively and safely聽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

June 13, 2016

Dear Addy, My son is about to start summer vacation. While he is excited, I鈥檓 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鈥檚 safety while allowing him to have fun this summer? Signed, Anxious About Summer Break Dear […]

Infusing Love: Superheroes Need Rest Too

June 8, 2016

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, 鈥淵ou need to ask for help!鈥滻 could have saved myself a few unnecessary headaches. I recall a time when my oldest son, Marques, was in the hospital with a bad […]

Intern Introspective: Introducing Eric

June 3, 2016

Earlier this year, we opened applications for a ten-week policy and government relations internship* for this summer. We are excited to introduce you to the two candidates that we selected! Eric and Camila are part of the bleeding disorders community and have been chosen because of their leadership qualities and interest in the field of […]

Shire Completes Combination with Baxalta

June 3, 2016

Today, June 3, 2016, Shire completed its previously announced acquisition with Baxalta Incorporated. The combined company is expected to deliver over $20 billion in annual revenues by 2020. The聽company is focused on serving patients with rare diseases and other highly specialized conditions. Read the press release from Shire in it’s entirety here.   About Shire聽 […]

The Ins and Outs of BMI

June 1, 2016

By Michelle Morath 鈥淗ealthy Bodies Bleed Less鈥 continues to be the mantra of HFA鈥檚 FitFactor program. It is our goal to get every community member at least considering the positive effects that physical activity and a healthy diet can have not only on their joint health, but also their overall health and sense of well-being. […]

Infusing Love: Nurturing My Soul

June 1, 2016

Do you ever wish there was someone who truly understood what you were going through? 聽Do you wish you could surround yourself with a support network of other women in your local area, but can鈥檛 find them? Do you wish you had more support from women in the bleeding disorders community? In 2013, a group […]

FDA Approves First Single Chain Product for Hemophilia A

May 27, 2016

Note: The below is an edited version of a press release by CSL Behring.聽The original release can be read in it’s entirety聽here. KING OF PRUSSIA, Pa., May 26, 2016 — CSL Behring announced today that the U.S. Food and Drug Administration (FDA) has approved AFSTYLA [Antihemophilic Factor (Recombinant), Single Chain], its novel long-lasting recombinant factor […]

Emicizumab Study Results Released in New England Journal of Medicine

May 26, 2016

Note: The New England Journal of Medicine released an article outlining the results of a study of a new drug,聽Emicizumab (ACE910, Chugai Pharmaceuticals), that shows reduced bleeding in patients with severe hemophilia A. Read the full article,聽Factor VIII鈥揗imetic Function of Humanized Bispecific Antibody in Hemophilia A, in the New England Journal of Medicine. This video […]

Infusing Love: Out of the Mouths of Babes

May 25, 2016

When Thomas was in preschool, my family and I attended our first HFA Symposium. One of the educational sessions featured a panel of speakers who shared how to best prepare yourself, your child, and your school for a child with hemophilia. I took copious notes during that session because we were only two years away […]

Conquering Mountains

May 24, 2016

  My beautiful wife Jackie, and I have three boys: Desmond, 8-years-old, Liam, 5-years-old and Patrick, 3-years-old. Patrick has聽severe hemophilia A, and inhibitors. We live in middle Georgia. Until three years ago we聽knew nothing about hemophilia. We had no family history and it was the furthest thing from our minds as parents. We have two聽strong, […]

Infusing Love: My Blood Gang

May 18, 2016

Not related by blood. Family because of it. I had a button made with this quote when Max participated in the Beards for Bleeders fund-raiser two years ago. Something I have gained from the bleeding disorder community is an oddly mismatched, but amazing group of BFFs. My gang, as I like to call them. What […]

Op-Ed: Serious ACA Wrinkle Jeopardizes Help for Chronic Patients

May 12, 2016

Note: The following is an op-ed written by Charlene Cowell, executive Director of HFA member organization Hemophilia of North Carolina. This article was originally published by the Raleigh News & Observer. To learn more about this issue affecting third party premium assistance, visit our Advocacy page. Despite a significant uptick in the number of insured […]

Infusing Love: Isolated No More

May 10, 2016

Until recently my husband and I didn鈥檛 realize how alone Chris felt growing up with hemophilia. He had support from family, friends, coaches, teammates, the treatment staff, and us. Yet he didn鈥檛 have anyone to talk with that really understood what it was like to have hemophilia. We tried our best to not treat Chris […]


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