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News & Perspectives

Hepatitis: Not Just For Men

July 28, 2016

I have severe factor 1 deficiency (afibrinogenemia) and have been Hepatitis C (HCV) positive since 1998. My source of infection was one of my many cryoprecipitate infusions (cryo being the only available treatment for anyone with factor 1 deficiency until 2009, and for me until November 2014). What makes me different than most people with […]

CSL Behring Presents Phase 3 Data about Afstyla for Hemophilia A

July 27, 2016

Note: The below is an edited version of an article originally published on PR Newswire. The original release can be read in it’s entirety here. CSL Behring today presented data from a Phase III pivotal study of Afstyla [Antihemophilic Factor (Recombinant), Single Chain] in hemophilia A patients less than 12 years of age at the XXXII International Congress […]

Voluntary Withdrawals of Helixate FS & Kogenate FS

July 26, 2016

As part of HFA’s ongoing mission to assist and advocate for the bleeding disorders community, this medical news is being issued to keep you informed about product safety. About These Withdrawals CSL Behring is initiating a voluntarily recall of two lots of its hemophilia A drug Helixate FS containing active ingredient manufactured before November 2015. […]

Adynovate Phase 3 Efficacy and Safety Data in Children to be Presented

July 26, 2016

Note: The below is an edited version of an article originally published on PR Newswire. The original release can be read in it’s entirety here. _________________________________________________________________________________________ Shire will present additional data on the clinical experience of ADYNOVATE [Antihemophilic Factor (Recombinant), PEGylated], an extended half-life recombinant Factor VIII (rFVIII) replacement for hemophilia A, during the International […]

CSL Behring Presents Phase III Data for IDELVION for Hemophilia B

July 26, 2016

Note: The below is an edited version of an article originally published on Yahoo Finance. The original release can be read in it’s entirety here. _________________________________________________________________________________________ CSL Behring announced new data today from its Phase III PROLONG-9FP clinical development program evaluating IDELVION® [Coagulation Factor IX (Recombinant), Albumin Fusion Protein], the company’s long-acting recombinant albumin fusion protein […]

Alnylam Announces New Positive Interim Phase 1 Study Results for Fitusiran

July 26, 2016

Note: The below is an edited version of an article originally published on StreetInsider.com. The original release can be read in it’s entirety here. _________________________________________________________________________________________ Alnylam Pharmaceuticals, Inc. announced today new positive results from its ongoing Phase 1 study with Fitusiran, an investigational RNAi therapeutic targeting antithrombin for the treatment of hemophilia A and B and […]

Infusing Love: Defining Normal

July 26, 2016

“How do you do it?” “Isn’t it difficult?” “Do you feel as though you need to wrap him in bubble wrap?” “How do you handle all of it?” Most bleeding disorders moms have had to answer those questions or something similar to them. Questions of that nature do not surprise me anymore, because what parenting […]

Novo Nordisk Announces New Data on Psychosocial Impact of People Living with Hemophilia B

July 26, 2016

Note: The below is an edited version of a press release by Novo Nordisk. The original release can be read in it’s entirety here.  Novo Nordisk today announced the first results from the Bridging Hemophilia B Experiences, Results and Opportunities into Solutions (B-HERO-S) study, which found that many adults and children living with even mild or […]

Dear Addy: Joint Replacement Surgery

July 25, 2016

Dear Addy, I’m a 50-year-old with hemophilia A, who’s right elbow has seen better days. I’m in the process of researching all my surgical options before making an appointment with my HTC. At this point in my life I’m really intrigued with an elbow replacement. Do you know of any other results throughout the community? […]

Spark Therapeutics and Pfizer Announce Receipt of FDA Breakthrough Therapy Designation for SPK-9001 for the Treatment of Hemophilia B

July 21, 2016

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. Spark Therapeutics and Pfizer Inc. announced today that the U.S. Food and Drug Administration (FDA) has granted breakthrough therapy designation to SPK-9001, the lead investigational candidate in the companies’ SPK-FIX program, in development for the treatment of hemophilia B. SPK-9001, a […]

HFA to Present CHOICE Project Data at World Federation of Hemophilia World Congress

July 21, 2016

HFA to Present CHOICE Project Data at World Federation of Hemophilia World Congress  The CHOICE Project was a first-of-its-kind data collection from people with hemophilia and other bleeding disorders. FOR IMMEDIATE RELEASE: July 21, 2016 Contact: Sonji Wilkes (202)-675-6984 or email at s.wilkes@hemophiliafed.org Hemophilia Federation of America (HFA) announced today that it will present new […]

Infusing Love: It’s About to Happen

July 19, 2016

When my son, Julian, began middle school, I kicked his hemophilia education into high gear.  He already knew the basics, but it was now time for him to learn how to call and order his factor, find the Hemophilia Treatment Center closest to him when on vacation, and to understand the importance of keeping the […]

HFA Continues Initiative with Centers for Disease Control and Prevention

July 19, 2016

The Hemophilia Federation of America (HFA), a national nonprofit headquartered in Washington, DC, has been awarded year three of a five-year cooperative agreement from the Centers for Disease Control and Prevention (CDC).  The award allows HFA to continue its mission of assisting and advocating for individuals and families in the bleeding disorders community by further […]

HFA Receives 4-Star Rating from Charity Navigator

July 14, 2016

Hemophilia Federation of America (HFA) recently earned a 4-star rating from Charity Navigator, the largest independent charity evaluator in the United States. Charity Navigator’s ratings system provides donors clear, objective, and reliable assessments of the financial health and accountability, and transparency of charities. Attaining a 4-star rating verifies that HFA exceeds industry standards and outperforms […]

Intern Introspective: A Day in the Life

July 14, 2016

The halfway point of our Policy and Government Relations Internship program is an excellent time to take stock of our interns’ first month or so. In this Intern Introspective, Cami and Eric break down what an average day in the life looks like as an HFA intern.  ___________________________________________________________________________________________ 9 am to 10 am – Cami […]

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

July 14, 2016

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 […]

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’s 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®-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 […]

Infusing Love: More than Max’s 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 “would probably never be able to have children.” I set out to live my life as such. You know those lists of “have […]

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.  Being physically active helps to strengthen one’s muscles, bones and joints.  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 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 […]

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. 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

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 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

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’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 […]

Infusing Love: It’s 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 […]


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