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Sangamo and Pfizer Announce Phase 1/2 Interim Data for Investigational Hemophilia A Gene Therapy

April 15, 2019

The following is an excerpt from a press release from Sangamo Therapeutics. Read the press release in its entirety here. Sangamo Therapeutics Inc., a genomic medicine company, and Pfizer Inc. announced interim data from the Phase 1/2 Alta study evaluating investigational SB-525 gene therapy for severe hemophilia A. Data indicate that SB-525 was generally well-tolerated […]

Infusing Love: Seasons of Change

April 10, 2019

  Life is full seasons, parenting is full of seasons, and most importantly raising a child with a bleeding disorder is full of seasons. Most often when I look back over the seasons the most obvious of seasons are that of survival, like getting from one day to the next or one walking through a […]

Word From Washington: HFA, Others, Urge For ACA Be Upheld

April 1, 2019

17 Patient Groups Urge Appeals Court to Uphold Health Care Law Loss of Patient Protections Would Raise Barriers to Health Insurance HFA joined a group of seventeen patient advocacy organizations in filing an amicus curiae (“friend of the court”) brief today in case of Texas v. United States, pending in the U.S. Court of Appeals […]

Washington Wire: March 2019

March 29, 2019

Protections for people with pre-existing conditions. You may recall that last December, a federal district court ruled in Texas v. United Statesthat the Affordable Care Act is unconstitutional in its entirety. This ruling, if upheld, would: eliminate important protections for people with pre-existing conditions; end the ACA鈥檚 Medicaid expansion; abolish the requirement that health plans […]

Infusing Love: Decisions and Apprehensions

March 20, 2019

  I came back from HFA鈥檚 2018 Symposium pumped. 鈥淭ogether We Rock鈥 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鈥檝e been sharing HFA鈥檚 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鈥檚 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.聽鈥 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鈥檚 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鈥檚 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 […]

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? […]


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