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News & Perspectives

Infusing Love: Decisions and Apprehensions

March 20, 2019

  I came back from HFA’s 2018 Symposium pumped. “Together We Rock” was an experience that left me much better equipped to face the many challenges of having a child with a bleeding disorder. Most of all I met other moms that go through similar situations with their own children; some were even from Puerto […]

Dear Addy: Raising Awareness

March 18, 2019

Dear Addy, I’ve been sharing HFA’s Facts a Day about Bleeding Disorders Awareness Month, but I want to do more. How can I help raise awareness about bleeding disorders? Signed, Ready to Activate Dear Ready to Activate, It’s wonderful to hear that you are motivated to help spread the word about bleeding disorders! As a […]

Hemophilia Federation of America Recognizes Bleeding Disorders Awareness Month

March 15, 2019

Download this Press Release here. FOR IMMEDIATE RELEASE March 15, 2019 Hemophilia Federation of America Recognizes Bleeding Disorders Awareness Month Monthlong Activities Raise Public Awareness for Bleeding Disorders Washington, D.C. — More than 30 years ago, President Ronald Regan designated the month of March as Hemophilia Awareness Month to bring awareness and attention to those living […]

Infusing Love: A Surprising Conference

March 13, 2019

  Parent teacher conferences are synonymous with an interrogation, grilling or even a public debate. I spent about 12 years being on the other side of that debate. I was the one calling the shots, telling parents what their children’s strengths and weaknesses were academically, socially and behaviorally. I was comfortable having the tough conversations […]

Infusing Love: Facing the Music

March 6, 2019

  It was 2002 when I married Harry, my high school sweetheart. Even then, I never discussed my dad with him because I had to keep my promise. I promised my dad who passed away when I was only 16 to never talk about hemophilia, AIDS, none of it. Harry put the pieces together though, […]

Washington Wire: February 2019

February 28, 2019

Featured Story: State Legislative Sessions Pick Up Steam In last month’s edition of the Washington Wire, we wrote about steps some states are taking with respect to their Medicaid programs. Here is a brief update on some of the Medicaid-related developments that have happened since then. Utah: the state legislature and Governor acted to override […]

Spark Therapeutics Enters into Merger Agreement with Roche

February 25, 2019

The following is an excerpt from a press release from Spark Therapeutics. Read the press release in its entirety here. Spark Therapeutics , a fully integrated, commercial gene therapy company dedicated to challenging the inevitability of genetic disease, announced today that it has entered into a definitive merger agreement for Roche to fully acquire Spark […]

Genentech joins the World Federation of Hemophilia Humanitarian Aid Program

February 21, 2019

The following is a press release from Roche. Read the press release in its entirety here. Roche announced it has joined the World Federation of Hemophilia Humanitarian Aid Program, a landmark initiative leading the effort to change the lack of access to care and treatment for people with inherited bleeding disorders in developing countries. Together […]

Novo Nordisk Receives FDA Approval for Hemophilia A Treatment

February 20, 2019

The following is an excerpt from a press release. Read the press release in its entirety here. Denmark-based Novo Nordisk received approval from the U.S. Food and Drug Administration for a new treatment for hemophilia A. However, the newly approved medication will not be available in the United States until 2020. Novo Nordisk said the […]

Dear Addy: Manufacturer Copay Assistance & Accumulator Adjuster Programs

February 18, 2019

Dear Addy, I use a manufacturer copay assistance program to help me meet the out-of-pocket costs associated with my clotting factor product. My insurer just notified me that it will no longer apply that assistance to my deductible and out-of-pocket maximums! Can they do that? Signed, Distressed Over Deductibles Dear Deductibles, You have run up […]

Infusing Love:  A Brotherly Bond

February 13, 2019

“Watch out for my brother. He’s a bleeder,” Logan will often say when we are at an interactive birthday party. Logan is Maddox’s 5-year-old brother. He is extremely protective of him. Whenever we are at an event Logan will do his best to “protect” his little brother from anyone pushing him too hard or potentially […]

uniQure Announces Updated Clinical Data from Phase IIb Study in Patients with Hemophilia B

February 8, 2019

The following is an excerpt from a press release from uniQure. Read the full press release here. uniQure, a leading gene therapy company advancing transformative therapies for patients with severe unmet medical needs, announced updated clinical data in patients treated in the company’s ongoing Phase IIb study of AMT-061, an investigational AAV5-based gene therapy containing a […]

Roche joins the World Federation of Hemophilia Humanitarian Aid Program

February 7, 2019

The following is an excerpt from a press release from Roche. Read it in its entirety here. Roche today announced that it has joined the World Federation of Hemophilia Humanitarian Aid Program, a landmark initiative leading the effort to change the lack of access to care and treatment for people with inherited bleeding disorders in […]

Infusing Love: Understand Your Stress

February 6, 2019

Caregiving is hard! Did I just state the obvious? I recently saw yet another article about caregivers, caregiver stress, caregiver burn out and the importance of self-care. You know, we’ve all seen them. If you’re like me you may even roll your eyes when you think there are some people that need to be told […]

uniQure Announces First Patient Treated in HOPE-B Pivotal Trial of AMT-061 in Patients with Hemophilia B

February 6, 2019

The following is an excerpt from a press release from uniQure. Read the full press release here. uniQure, a leading gene therapy company advancing transformative therapies for patients with severe unmet medical needs, today announced that it treated the first patient in its HOPE-B pivotal trial of AMT-061, an investigational AAV5-based gene therapy incorporating the […]

Washington Wire: January 2019

January 31, 2019

FEATURED STORY What to Watch in the States in 2019 – State Medicaid Trends Legislative sessions have begun in all but four states (Alabama, Florida, Louisiana and Nevada begin sessions in the months ahead).  As lawmakers begin to tackle the numerous issues they need to address in the coming months, let’s look at what to […]

Word From Washington: Government Shutdown Gets Reprieve

January 25, 2019

President Trump announced today that he would sign a bill funding the government through February 15th and ending the 5-week long government shutdown. The President said he will continue to negotiate with Congress on border security issues over the next three weeks but held out the possibility that the government could shut down again if there […]

Infusing Love: Educating Our Children

January 23, 2019

“A Drop of Blood” Educating our Children “Sometimes I cut my finger, Sometimes I scrape my knee, Sometimes a drop or two of blood Comes dripping out of me. That means I lose some platelets, Some white cells and some red; I lose them by the millions In every drop I shed. But I don’t […]

Takeda Completes Acquisition of Shire, Becoming a Global, Values-based, Biopharmaceutical Leader

January 23, 2019

The following is a press release from Takeda, formerly Shire. Find the original press release here. Takeda Pharmaceutical Company Limited announced the completion of its acquisition of Shire, becoming a global, values-based, R&D-driven biopharmaceutical leader headquartered in Japan. Takeda now has an attractive, expanded geographic footprint and leading position in Japan and the U.S., bringing […]

Dear Addy: Surprise Billing

January 21, 2019

  Dear Addy I’ve heard the term “surprise billing” in the news recently and I’m concerned about how it could affect my family, especially if we have to go to the emergency room for a bleed and a provider is out-of-network. Can you share more on this issue and what we can do if it […]

Save One Life Inc. Welcomes Chris Bombardier as New Executive Director

January 16, 2019

The following is an excerpt from a press release from Save One Life Inc. Read the press release in its entirety here.  Save One Life Inc. announces a new executive director. Save One Life is an international nonprofit that assists people with hemophilia in developing countries. Christopher G. Bombardier, famous for being the first person […]

Plasma Protein Therapeutics Association Welcomes New President and CEO

January 16, 2019

  The following is an excerpt from the Plasma Protein Therapeutics Association. Read the full press release here. The Board of Directors of the Plasma Protein Therapeutics Association announced Amy Efantis will be its next President and Chief Executive Officer effective Jan. 16, 2019. Having served most recently as Vice President, Global Public Policy & […]

Infusing Love: Rocking with Hemophilia

January 16, 2019

  When Thomas was much younger, we spent a lot of time in the hospital and as all moms know, keeping a toddler entertained for hours is challenging. I don’t think of him or myself as ancient, but this was pre-tablet days; I would actually haul a portable DVD player and a boxed set of […]

Infusing Love: Thanks, But Not Now

January 2, 2019

HFA does not recommend, endorse or make any representation about the efficacy, appropriateness or suitability of any specific products, treatments, or opinions. Please consult your physician before use of any treatments. We recently had Jackson’s six-month comprehensive visit at the hematologist. A comprehensive visit is an appointment in which many bleeding disorders specialists meet with […]

Washington Wire: December 2018

December 27, 2018

Featured Story: Federal court rules that the ACA is unconstitutional: Texas v. Azar On Friday, Dec. 14, we learned a federal judge had ruled in the case of Texas v. Azar that the Affordable Care Act is unconstitutional in its entirety. This news has alarmed many. HFA staff posted a number of updates to tell the […]

Mental Health Awareness Campaign: Difficult Holidays and Year End

December 27, 2018

  Even if you’ve been feeling okay, the end of the year can bring mental health challenges for anyone of any age.  It’s no coincidence that in much of the United States the winter months can be some of the darkest, longest and coldest. The way many people cope is to celebrate the traditions of […]

Infusing Love: How Do You Measure

December 27, 2018

  “525,600 minutes…525,000 moments so dear.”  Just like the song from the musical “Rent,” those 525,600 minutes go so quickly, and you feel as though in a blink of an eye the year is gone. As we see the finish line of another year, I can’t help but look back at 2018 with mixed emotions. […]

Dear Addy: Advocacy Leadership Council

December 24, 2018

Dear Addy, I’m the parent of a hemophiliac and I’d like to become more involved in advocacy work to support my child and the bleeding disorders community at-large. Does HFA have any advocacy programming available for parents? Signed, Active Advocate   Dear Advocate, Yes! HFA recently announced the creation of a new Advocacy Leadership Council. […]

Word From Washington: Partial Federal Government Shutdown

December 22, 2018

Congress and the President failed to reach agreement on a government spending bill before the deadline of December 21, 2018. As a result, number of U.S. government agencies have halted work and will remain shut down until a deal is reached. In contrast to some earlier budget standoffs, though, this time approximately ¾ of the […]

Genentech’s Hemlibra Provided Sustained Bleed Control in a Study of Children with Hemophilia A with Factor VIII Inhibitors

December 20, 2018

The following is an excerpt from a press release from Genentech. Read the press release in its entirety here. Genentech, a member of the Roche Group announced data from the primary analysis of the Phase III HAVEN 2 study evaluating Hemlibra® prophylaxis in children younger than 12 years of age with hemophilia A with factor […]


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