Donate

Infusing Love:聽 A Brotherly Bond

February 13, 2019

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

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鈥檝e all seen them. If you鈥檙e like me you may even roll your eyes when you think there are some people that need to be told […]

Infusing Love: Educating Our Children

January 23, 2019

鈥淎 Drop of Blood鈥 Educating our Children 鈥淪ometimes 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鈥檛 […]

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 […]

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.聽 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 […]

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鈥檛 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鈥檚 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聽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鈥檝e been feeling okay, the end of the year can bring mental health challenges for anyone of any age.聽 It鈥檚 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

  鈥525,600 minutes鈥525,000 moments so dear.鈥澛 Just like the song from the musical 鈥淩ent,鈥 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鈥檛 help but look back at 2018 with mixed emotions. […]

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 戮 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庐 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聽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聽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 […]

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庐聽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.,聽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 […]

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聽Congress will be a divided Congress 鈥 聽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鈥檚 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.聽 Though I was nervous, I had spent a lot of […]

Mental Health Awareness Campaign: National Caregivers Month

November 21, 2018

  November, is National Caregivers Month. It鈥檚 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鈥檚 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 […]

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 […]

Infusing Love: There鈥檚 No Quitting

October 26, 2018

About a year or so ago, I thought it would be a great idea for HFA to apply to be a Charity Partner for the Marine Corp Marathon in Washington, D.C.聽 When we were selected, I was beyond excited.聽 Running a marathon was on my bucket list.聽 I know, really clich茅, but true.聽 It was […]

Mental Health Awareness Campaign: How to Get Started

October 18, 2018

  You have decided to take the first step toward mental health care, but how do you get started? Luckily you have options and many people around who are eager to help. Most times, the initial step of reaching out are with the individuals and groups that you most trust, such as family, friends, physician, […]

Word from Washington: HFA Joins Amicus Brief in Legal Challenge to Short-Term Health Insurance Rule

October 8, 2018

As we鈥檝e previously reported, several lawsuits are currently pending in federal courts concerning aspects of the Affordable Care Act. One lawsuit questions whether the ACA is still valid, despite the elimination of the individual mandate penalty; other cases take an opposite tack, challenging recent Administration actions and rulemakings as inconsistent with the ACA. Today, HFA […]

FDA Approves Genentech’s Hemlibra

October 4, 2018

The following is an excerpt from a press release from Genentech. Read the entire press release here. Genentech, a member of the Roche Group, announced that the U.S. Food and Drug Administration has approved Hemlibra庐(emicizumab-kxwh) for routine prophylaxis to prevent or reduce the frequency of bleeding episodes in adults and children, ages newborn and older, […]

Infusing Love: A Busy First Week of School

September 26, 2018

My boys went back to school聽this past week, and while I’m not exactly a pro, I have done this before. My youngest, Myles started first grade while my oldest, Zachary, began fifth聽grade. The first week of school is exhausting, overwhelming, and frustrating.聽It won’t be a picnic for a child with a bleeding disorder and a […]

Infusing Love: Daycare to Preschool

September 12, 2018

We鈥檝e been lucky enough to have Maddox home with us since he was diagnosed at 6 months old. My husband works nights, so he watches him during the day. We pulled him from daycare at 6 months because we were worried about other kids throwing things at him, and potentially him making the wrong move […]

Genentech Announces the Launch of New Safety Website

September 3, 2018

Genentech has announced a new web portal for patients and caregivers intended to provide timely and accurate information on targeted serious adverse events of interest for HEMLIBRA. Visit the safety website:聽http://www.emipatientinfo.com/. Earlier this year, Genentech launched a similar site specifically for health care providers. In announcing the launch, Genentech stated 鈥淭his website is meant to […]


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