Donate

News & Perspectives

Genentech Presents Data for Hemlibra at the ISTH 2019 Congress

July 10, 2019

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 today new data for Hemlibra庐 (emicizumab-kxwh) across multiple pivotal studies in people with hemophilia A with and without factor VIII inhibitors at the International Society on Thrombosis and […]

uniQure Announces Follow-Up Data from Study in Patients with Hemophilia B

July 10, 2019

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

Octapharma Presents New Data at the International Society on Thrombosis and Haemostasis 2019 Congress

July 10, 2019

The following is an excerpt from a press release from Octapharma. Read the press release in its entirety here. Octapharma announced that new data on the benefits of Nuwiq庐 in patients with hemophilia A were presented during a scientific symposium at the 27th International Society on Thrombosis and Haemostasis Congress in Melbourne, Australia. The symposium, […]

Word From Washington: HFA Monitoring ACA Case

July 10, 2019

HFA continues to monitor the Texas v. United States case, in which a U.S. district court declared that the entire Affordable Care Act is unconstitutional by virtue of Congress鈥檚 2017 repeal of the ACA鈥檚 individual mandate tax penalty. The district court ruling has been appealed by California and 19 other states, along with the U.S. […]

Sangamo and Pfizer Announce Updated Results of Investigational Hemophilia A Gene Therapy

July 9, 2019

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

HFA Given Highest Honors by Two Nationally-Known Nonprofit Watchdogs

July 8, 2019

  Hemophilia Federation of America is committed to transparency, a fact recently recognized when the organization received a four-star rating by Charity Navigator and a Platinum Seal of Transparency by GuideStar, two respected nonprofit watchdogs. With an annual operating budget of more than $6 million, HFA relies on a diversity of funding sources and is […]

Intern Introspective: The First Five Weeks

July 5, 2019

The midway point of our Policy and Government Relations Internship is an excellent time for Jasmin and Dylan to reflect on the first five weeks of their internship. In this blog post, they break down what an average week looks like for them as HFA interns and what the rest of the summer holds. Jasmin: […]

Infusing Love: Broken, But Not Beaten

July 2, 2019

    Winter weather has always raised my hemophilia mom radar. Icy sidewalks make me very nervous and I鈥檝e yelled out, 鈥淚ce ahead,鈥 many times over the last 15 years in warning to Thomas. But as we all know, we can鈥檛 be with our kids all day, every day and accidents are bound to happen. […]

Dear Addy: Virtual Hill Day

July 2, 2019

Dear Addy, I recently saw HFA post on Facebook about an advocacy day on Capitol Hill. I wasn鈥檛 able to participate on the day of the event; can I still get involved? Signed, Advocacy Amplified Dear Advocacy, Yes! The posts you saw were in conjunction with HFA鈥檚 annual Patient Fly-in and Virtual Hill Day on […]

Washington Wire: June 2019

June 28, 2019

Featured Stories: HFA held a Patient Fly-in and Virtual Hill Day聽on June 10, 2019. Twenty-four community members from 14 different states came to Washington, D.C. to tell their lawmakers about living with bleeding disorders 鈥 and to explain what people in our community need in terms of quality, affordable health coverage. Fly-in participants also urged […]

Bayer to present new data at Congress of International Society on Thrombosis and Haemostasis

June 27, 2019

The following is an excerpt of a press release from Bayer. Read the press release in its entirety here. Bayer will present new data highlighting clinical outcomes from its hemophilia A portfolio, which include long-term data from the PROTECT VIII investigational study evaluating use of Jivi庐 antihemophilic factor (recombinant) PEGylated-aucl. These data will be presented […]

Infusing Love: Tattoos

June 26, 2019

  Our son, Michael, recently surprised us with the news that he was going to get a tattoo! I know, I know, he is 26 years old and can make his own decisions.聽But he still has severe hemophilia B with inhibitors. I got that knot in my stomach that all moms get 鈥 it鈥檚 a […]

Intern Introspective: Hitting the Ground Running

June 21, 2019

Earlier this month, HFA introduced you to Jasmin and Dylan, our summer Policy and Government Relations Interns. Jasmin and Dylan have been busy in D.C., attending congressional hearings and learning the ropes of working for a national nonprofit organization. During their second week, Jasmin and Dylan experienced first-hand the planning and execution of our sixth […]

Infusing Love: Singing the Praises of Fathers

June 19, 2019

I have to admit this blog gave me extreme anxiety about writing.聽Not in the respect that my father (Thomas Gibson), my husband (Alan) nor my father-in-law (James Hooper) are horrible fathers. It鈥檚 just very difficult to express my absolute gratitude to these individuals.聽These three fathers and grandfathers play such an important and vital role both […]

Intern Introspective: Welcome Jasmin and Dylan

June 7, 2019

Hemophilia Federation of America is pleased to introduce our Summer 2019 Policy and Government Relations Interns, Jasmin Wyatt and Dylan Edwards. As members of the bleeding disorders community, they understand the mission of HFA firsthand. Jasmin and Dylan were selected for the internship because of their leadership qualities and interest in the field of policy […]

Washington Wire: May 2019

May 30, 2019

Featured Story: CMS decides against allowing Medicare plans to limit coverage of 鈥減rotected class鈥 drugs. This past month brought some welcome news from the U.S. Centers for Medicare and Medicaid Services. On May 16, CMS released a final rule on drug pricing in the Medicare Advantage and Medicare Part D programs. In that final rule, […]

Infusing Love: 隆Me logr茅 encontrar a m铆 misma!

May 29, 2019

  This blog is translated in English below. Este pasado d铆a de las madres celebr茅 mi a帽o n煤mero 23 de ser madre. 隆No s茅 ni como esto pas贸 tan r谩pido! En una pesta帽ar de ojos mis hijas han crecido y se han independizado, pero soy una mam谩 muy feliz. Criar a hijas involucra mucho tiempo […]

BioMarin Announces Update to Hemophilia A Clinical Development Program

May 28, 2019

The following is an excerpt from a press release from BioMarin. Read the press release in its entirety here. BioMarin Pharmaceutical Inc. announced its investigational gene therapy, valoctocogene roxaparvovec, for adults with severe hemophilia A achieved pre-specified clinical criteria for regulatory review in the U.S. and Europe. As of May 28, 2019, eight patients in […]

Dear Addy: History Exhibit

May 20, 2019

Dear Addy, I attended HFA鈥檚 Symposium in San Diego and really enjoyed the history exhibit. Is there a way for me to access the timeline? I鈥檇 like to read more about the history of the bleeding disorders community. Signed, Advocate for the Ages 聽Dear Advocate, Yes! You can access the latest version of HFA鈥檚 historical […]

Word From Washington: CMS Drops Proposal to Allow Medicare Plans to Limit Coverage of “Protected Class” Drugs

May 17, 2019

  The U.S. Centers for Medicare and Medicaid Services (CMS) released a final rule yesterday on drug pricing in the Medicare Advantage and Medicare Part D programs. In its final rule, CMS chose not聽to implement a harmful change that it had initially put forward 鈥 a change strongly opposed by HFA and numerous other patient […]

Infusing Love: An Undeniable Connection

May 14, 2019

If you鈥檝e ever attended HFA鈥檚 Symposium, you probably know that the mom鈥檚 rap session is usually one of the most popular sessions and quite often has the most profound conversations. If you haven鈥檛 been 鈥 a mom鈥檚 rap session is just that 鈥 a chance for moms to sit around the room and talk about […]

uniQure Presents Updated Clinical Data on Gene Therapy for Hemophilia B

May 10, 2019

The following is an excerpt from a press release from uniQure. Read the full press release here. uniQure聽announced updated clinical data in patients treated in the company鈥檚 ongoing Phase IIb study of AMT-061, an investigational AAV5-based gene therapy containing a patent-protected FIX-Padua variant, for the treatment of patients with severe and moderately severe hemophilia B. […]

Infusing Love: The Ideal Mother’s Day

May 8, 2019

  Most that know me will tell you I do everything for my kiddos. That I spoil them. That I鈥檓 always driving them to after school activities or going to the park, for walks, bike rides, etc. I rarely say no and let them try whatever sports and activities they want to do. I spend […]

uniQure Announces New Preclinical Data in Hemophilia A and Fabry Disease

May 2, 2019

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, presented new preclinical data on its gene therapy candidates for the treatment of hemophilia A and for the treatment of Fabry disease during back-to-back oral presentations at the 22nd聽American Society […]

Infusing Love: Step Aside, Mom Advocate Coming Through

May 2, 2019

  This past month we had the fight of our lives. My employee insurance runs February through January and my employer offered a new insurance plan this year. Much to our dismay, the insurance would not cover my son鈥檚 factor medication. Our insurance wanted our son to fail on three out of four factor products […]

Washington Wire: April 2019

April 30, 2019

Featured Story: Some relief ahead from accumulator adjusters. Finally some good news regarding accumulator adjusters! Patient advocates, including HFA, have been warning lawmakers that accumulator adjuster programs threaten access to care for people with chronic health conditions. In recent weeks, state and federal lawmakers signaled they have heard this message and took steps to rein […]

Infusing Love: Letting Him Do It His Way

April 24, 2019

  For some of us hemophilia Moms we went through the time where we had to hold down our son to give him his factor or buy out the dollar store for him to be rewarded for his cooperation! Finally, we get to the point when holding down or rewards are no longer part of […]

Recall Notice: Fentanyl Transdermal Pain Patches Recalled Due to Product Mislabeling

April 23, 2019

The following is from the FDA MedWatch. Read the recall notice in its entirety here. Alvogen Inc. is voluntarily recalling two lots of Fentanyl Transdermal System 12 mcg/h transdermal patches to the consumer level. A small number of cartons labeled 12 mcg/h Fentanyl Transdermal System patches contained 50 mcg/h patches. The 50 mcg/h patches that […]

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 […]

Dear Addy: 5 Minutes for Project CALLS

April 15, 2019

Dear Addy- I am having a horrific time with my insurance company getting a prior authorization approved. I know I should call Project CALLS, but I simply don鈥檛 have time to be on the phone with the insurance company and Project CALLS. Why is it so important that I let HFA know what鈥檚 going on […]


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