Donate

News & Perspectives

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 Spiderman […]

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. For […]

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 […]

Sangamo Announces Treatment Of First Patient In Clinical Trial Of In Vivo Genome Editing Therapy For Hemophilia B

December 20, 2018

The following is an excerpt from a press release from Sangamo. Read the press release in its entirety here. Hemophilia B is a rare, genetic bleeding disorder caused by a lack of the factor IX (FIX) protein, which is necessary for normal blood clotting. Current hemophilia B treatments typically require frequent intravenous infusions of clotting […]

Word From Washington: December 14, 2018 Ruling in TX V. Azar, Update #2

December 17, 2018

Last Friday evening, we learned that 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 want to update you on what we know at this point. First and foremost, please be aware that this ruling does […]

Word From Washington: December 14, 2018 Ruling in TX v. Azar

December 14, 2018

HFA learned late Friday night that a federal court has struck down the entire Affordable Care Act as unconstitutional. You can find an explanation of the lawsuit (Texas v. Azar) here and can read a description of the latest ruling here. HFA is studying the ruling and will post a more detailed update soon. In the […]

Dear Addy: Learning Central

December 10, 2018

Dear Addy, I’ve heard about HFA’s new Learning Central, but I’m not sure how to find it and the benefits of using it. Can you provide more information? Signed, Lifelong Learner Dear Learner, HFA’s Learning Central is part of the HFA Institute, a new e-learning initiative designed for the bleeding disorders community. The HFA Institute […]

Genentech’s Hemlibra Provided Sustained Bleed Control in the Largest Pivotal Study in Children with Hemophilia A with Inhibitors

December 5, 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 VIII […]

Bioverativ Data Presented at ASH Underscore Potential for Once Weekly Dosing with Sustained High Factor Levels in Hemophilia A

December 5, 2018

The following is an excerpt from a press release from Bioverativ. Read the press release in its entirety here. Bioverativ Inc., a Sanofi company dedicated to transforming the lives of people with rare blood disorders, presented new data from the EXTEN-A Phase 1/2a trial of BIVV001 showing that a single 65 IU/kg dose of BIVV001 extended […]

uniQure Announces Long-Term Clinical Data from Ongoing Phases and Confirms Dose for Hemophilia B Study

December 5, 2018

The following is an excerpt from a press release from uniQure. Read the press release in its entirety here. uniQure N.V., a gene therapy company advancing transformative therapies for patients with severe medical needs, announced updated results from its ongoing Phase I/II trial of AMT-060, and provided an update on AMT-061, the company’s next-generation gene therapy candidate […]

Washington Wire: November 2018

November 30, 2018

Featured stories: Healthcare was a driving issue for many voters in the 2018 mid-term elections. The results of the 2018 election are in and we now know that the 116th Congress will be a divided Congress –  a Republican Senate and a Democratic House. Will the new Congress do anything to impact access to meaningful healthcare? […]

Infusing Love: It Could Have Been Worse

November 29, 2018

On Liam’s first day of kindergarten in late August, we brought him to school with a mix of pride, fear, excitement, and tears. Okay, I was the only one who shed the tears, but we were all ready for this big day to arrive.  Though I was nervous, I had spent a lot of time […]

Update on uniQure’s Hemophilia B Gene Therapy Program

November 28, 2018

The following is an excerpt from a press release from uniQure. Read the press release in its entirety here. uniQure announces the initial topline data from our Phase 2B dose-confirmation study of AMT-061, an investigational gene therapy for the treatment of patients with severe and moderately severe hemophilia B. All patients achieved and sustained therapeutic […]

uniQure Highlights Pipeline Expansion and Advancements in Technology at Research and Development Day

November 28, 2018

The following is a press release from uniQure. uniQure, a gene therapy company advancing transformative therapies for patients with severe medical needs, announced the expansion of its research pipeline with novel AAV gene therapy approaches to treating Hemophilia A, Fabry disease and Spinocerebellar Ataxia Type 3 at the Company’s Research & Development Day held this […]

Dear Addy: New Legislator

November 26, 2018

Dear Addy, My district elected a new member of Congress in the mid-term election and I’d like to start building a relationship with them. How can I connect with my legislator as they prepare to take office? Signed, Proactive Advocate Dear Proactive, It’s never too early to start building a relationship with your new legislator. […]

Mental Health Awareness Campaign: National Caregivers Month

November 21, 2018

  November, is National Caregivers Month. It’s the one day a year, set aside to acknowledge those who volunteer to care for family members, friends and neighbors who are managing health challenges and other disabilities. Not all superheroes wear capes. Some are managing medications, organizing medical records, scheduling doctor’s appointments and some superheroes are just […]

Infusing Love: Thankful for Pain

November 21, 2018

My first baby was also my first baby with a bleeding disorder. My husband and I did not know this while he grew inside of my body. So instead of learning about factor products, ports, or how to keep him bleed free, I read about natural childbirth, how to make my own baby food, what […]

uniQure Announces First Patient Treated in Dose-Confirmation Study in Patients with Hemophilia B

November 19, 2018

The following is an excerpt from a press release from uniQure. uniQure announced that they have treated the first patient in our Phase 2B dose-confirmation study of AMT-061, an investigational gene therapy for the treatment of patients with severe and moderately severe hemophilia B (see attached press release). “As a one-time administered therapy, AMT-061 has the […]

Dear Addy: Framing Your Story

November 13, 2018

Dear Addy, I’d like to be more involved in my local organization’s advocacy work in the new year, but I have a hard time coming up with the right words to get my point across. Does HFA have any resources for storytelling for advocacy? Signed, In Need of Instruction Dear Instruction, You came to the […]

Genentech to Present New Data at the American Society of Hematology 2018 Annual Meeting

November 7, 2018

  The following is an excerpt from a press release from Genentech. Read the press release in its entirety here. Genentech has announced new data that will be presented at this year’s annual American Society of Hematology meeting held in San Diego from Dec. 1-4. Ten Genentech medicines will be featured in more than 70 abstracts, including […]

Washington Wire: October 2018

October 30, 2018

Featured stories: New HHS policy could diminish protections for people who depend on quality, affordable health insurance. On Oct. 22, the U.S. Department of Health and Human Services released new guidance spelling out how states can win approval to waive various Affordable Care Act requirements. This arcane new policy could seriously impact protections for patients […]

Dear Addy: 2019 Open Enrollment Period

October 29, 2018

Dear Addy, I know that the Open Enrollment Period for health insurance is right around the corner. As a person with a bleeding disorder, what should I look for in an insurance plan? Signed, Savvy Subscriber Dear Subscriber, The Open Enrollment Period is a time frame each year when health insurance plans or HMOs (health maintenance organizations) are […]


Sign up for E-mails, Dateline Magazine, and other ways to stay connected.