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News & Perspectives

Infusing Love: Remembering the HIV Crisis

December 18, 2019

  Do you remember the first time you heard about HIV or AIDS? Now it鈥檚 common to hear of it and you probably know people that have HIV. It was the early ’80s when I first heard of HIV, there wasn鈥檛 even a name for it yet. I was sitting in my truck during a […]

Best of You, Journey to Healthier Joints: Meet Orlando

December 18, 2019

Meet Orlando Vives | Team聽Asociaci贸n Puertorrique帽a de Hemofilia My name is Orlando Vives and I am a member of the Asociaci贸n Puertorrique帽a de Hemofilia. When starting out the challenge I honestly thought I would need to step up how much exercise I did in a day, but I was rather surprised to find the amount […]

Best of You, Journey to Healthier Joints: Meet Eduardo

December 18, 2019

Meet Eduardo Rodriguez | Team Asociaci贸n Puertorrique帽a de Hemofilia I鈥檓 the public relations coordinator for Asociaci贸n Puertorrique帽a de Hemofilia and part of the APH team for HFA鈥檚 Journey to Healthier joints challenge. As a von Willebrand patient I have never had any serious issues besides one of my knees. For that reason and also my […]

Best of You, Journey to Healthier Joints: Meet John

December 18, 2019

Meet John Faria | Team Captain | Team Oklahoma Hemophilia Foundation My name is John Faria and I am a big fan and proponent of HFA and the Blood Brotherhood program! I鈥檝e had the pleasure of being Oklahoma Hemophilia Foundation鈥檚 Men鈥檚 Committee Lead until this past November, where I am hanging up the reigns after […]

Sangamo and Pfizer Announce Updated Results in Gene Therapy Treatment

December 18, 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 follow-up results from the Phase 1/2 Alta study evaluating investigational SB-525 gene therapy in patients with severe hemophilia A. The data showed that SB-525 […]

Dear Addy: Informed Voter

December 16, 2019

Dear Addy, With the 2020 elections less than a year away, I鈥檇 like to become more informed about the candidates鈥 positions on health reform issues. Can you recommend resources to find and compare information? Signed, Informed Voter Dear Voter, Health reform will continue to be a critical issue for 2020 candidates, as it was during […]

Word From Washington: Surprise Medical Billing & SC Medicaid Work Requirements

December 13, 2019

HFA joined with other national patient and consumer groups to issue a number of statements on important health policy topics this week. HFA and 26 other national groups applauded news of a bipartisan agreement on surprise medical billing聽between the Senate Committee on Health, Education, Labor, and Pensions and the House Committee on Energy and Commerce […]

First Patient Dosed in Phase 3 of Study in Patients with Severe Hemophilia A

December 12, 2019

The following is an excerpt from a press release from Sanofi Genzyme. Read the press release in its entirety here. Sanofi and SobiTM聽announced the first patient has been dosed in the Phase 3, open-label, interventional study of BIVV001 (rFVIIIFc-VWF-XTEN), in patients with severe hemophilia A (XTEND-1 study; NCT04161495). Sobi and Sanofi are development partners for […]

Best of You, Journey to Healthier Joints: Meet Matthew

December 5, 2019

Meet Matthew Tach茅 | Team Hemophilia Foundation of Oregon We are pleased to feature our member organization, Hemophilia Foundation of Oregon, a participant in Your Journey to Healthier Joints Activity Challenge. In this video, HFO team member, Matthew Tach茅, tells us about the workout routine he uses to strengthen his joints and reduce bleeds.   […]

Best of You, Journey to Healthier Joints: Meet Kevin

December 5, 2019

Meet Kevin Finkle | Team聽Bleeders of the Great Northwest Kevin is the team leader for Bleeders of the Great Northwest. He shares the unique way he gets exercise:聽鈥淗ere is a video of me getting exercise while practicing with my African marimba band, White Rhino Marimba.聽Exercise doesn’t have to happen in a gym, it is important […]

Washington Wire: November 2019

November 27, 2019

Open Enrollment for 2020 insurance plans ends soon 鈥 don鈥檛 miss out! The Open Enrollment Period聽for 2020 insurance plans ends soon for Medicare plans, for individual insurance plans (in most states), and for many employer health insurance programs. It is important to take action during this timeframe to assure you have health coverage for 2020. […]

Best of You, Journey to Healthier Joints: Meet Tim

November 26, 2019

Meet Tim Wicks | Team Hemophilia Foundation of Michigan I am the Director of Camp Bold Eagle and the Youth Services Manager at the Hemophilia Foundation of Michigan. I also have severe hemophilia A and am on the HFM team for HFA’s Journey to Healthier Joints challenge. I was doing really well with getting my […]

Infusing Love: Unstoppable Resilience

November 26, 2019

My dad taught me how to box and dance salsa; with these two skills鈥攕alsa and boxing鈥擨 learned how to defend myself and to never give up. I learned to always take notes on movements and to dance my way to resilience. Have you ever had the biggest hiccup that you just couldn鈥檛 get rid of? […]

BioMarin Hemophilia A Clinical Development Program Update

November 21, 2019

The following is a press release from BioMarin. 聽BioMarin is pleased to update the community regarding our gene therapy clinical trial program in hemophilia A.聽 Clinical Trial Update聽 BioMarin鈥檚 investigational gene therapy valoctocogene roxaparvovec, is currently being studied in adults with severe hemophilia A.聽 The first Phase 1/2 study was initiated in 2015 and consists […]

Cornfields, Camping and Camaraderie

November 19, 2019

Nationally-known cycling event creates amazing memories for Team Resilience participants By: Emily Roush-Bobolz,聽Staff Writer While Hemophilia Federation of American has been hosting the Gears for Good National Ride from West Virginia to Washington, D.C., for eight years, the organization had a larger vision 鈥 use existing athletic and competitive events around the country to raise […]

La Menstruacio虂n es un Proceso Natural como Cualquier Otro

November 19, 2019

Por: Andy Anderson y Martha Boria, escritores del personal 鈥淎hora eres una mujer鈥. 鈥淎qu铆 est谩n las toallas higi茅nicas鈥. 鈥淧uedes sostener una toalla de agua caliente en el est贸mago por los dolores鈥. 驴Suena esto familiar? Para muchos de nosotros, hablar de per铆odos era solo algo que pod铆amos hacer con mam谩. No lo discutimos en la escuela […]

Medicare 101: Who’s Paying for Your Care?

November 19, 2019

By: Kimberly Ramseur, Staff Writer With all the talk about health care financing, it is easy to get confused and overwhelmed with all the information being disseminated. If an individual falls under one of the following, he or she may be eligible for Medicare, a national health insurance program administered by the Center for Medicare […]

Advocate Finds Her Voice with New Council

November 19, 2019

Advocacy Leadership Council member shares her experience at HFA鈥檚 2019 Patient Fly-In By: Natalie Parker, Guest Writer I was nervous before walking into a Congressional office. The U.S. Capitol is huge! I didn鈥檛 know what to expect and I wasn鈥檛 sure they would listen to me. After all, legislators and their staff meet with numerous […]

Understanding FDA Drug Recall Procedures

November 19, 2019

It is important to pay attention when a product is recalled, but with all the different sources of information, and the different types of recalls, it can be confusing. Recalls, designed to protect the public鈥檚 health, are used as a way to deliver information to consumers in an expeditious manner. A recall is an action […]

Executive Corner

November 19, 2019

Dear Friends, For nearly 11 years Hemophilia Federation of America has had the same leadership guiding and taking the organization where the community has requested. Throughout this time, HFA has grown by leaps and bounds, not only in the size of the organization, but more importantly in what we are able to offer the community […]

Infusing Love: A New Day Has Come

November 13, 2019

I never thought this day would come鈥. When Myles was first diagnosed with hemophilia A, I knew we had a long road ahead of us. Doctor appointments and worrying about safety both inside and outside of school, could always be scary. However, the scariest was the responsibility of making sure Myles always had the correct […]

Sangamo to Announce Gene Therapy and Ex Vivo Gene-Edited Cell Therapy Data at ASH

November 7, 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, announced that hemophilia A gene therapy clinical data and hemoglobinopathies ex vivo gene-edited cell therapy data will be featured in poster presentations at the 61st Annual Meeting of the […]

Sigilon Therapeutics to Present Preclinical Data on Rare Blood Disorders at ASH

November 7, 2019

The following is a press release from Sigilon Therapeutics. Sigilon Therapeutics聽announced it will present data at the American Society of Hematology Annual Meeting demonstrating that its novel Shielded Living TherapeuticsTM platform for rare bleeding disorders remains viable in animal models for at least six months. The data also demonstrate dose-responsive in vivoexpression of human coagulation […]

Infusing Love: Stand Up to Bullying

November 6, 2019

  Bullying has no shame. It shows no prejudice. Bullying affects anyone of any size, age, and ethnicity.聽 It affects all of us. When I watch grown people intentionally hurt each other with words and actions, it always surprises me. One day I asked a young lady why she was making fun of her coworker. […]

Washington Wire: October 2019

October 31, 2019

Open Enrollment begins for 2020 insurance plans. The Open Enrollment Period聽is a time frame each year when health insurance plans聽are required by law to accept applications from聽new plan聽enrollees regardless of their health history. This also is the time when you can choose to stay with your existing health plan if it is the right one […]

Dear Addy: 2020 Open Enrollment

October 30, 2019

Dear Addy, I keep seeing reminders about open enrollment beginning November 1, 2019. As a person with a bleeding disorder, what should I look for in an insurance plan? Signed, Investigating Insurance Dear Investigator, The聽Open Enrollment Period聽is a time frame each year when health insurance plans or聽HMOs (health maintenance organizations)聽are required by law to accept […]

Infusing Love: Keys to the Kingdom

October 30, 2019

Over the last several years, I have been focused on the idea of transition and independence as Thomas speeds through his adolescence. While he will always be my little boy, I simply have to face the facts that this six-foot, 16-year-old will be making decisions for himself and his healthcare in short order. There have […]

Dear Addy: Medicare Open Enrollment 2020

October 23, 2019

Dear Addy, I am a Medicare beneficiary weighing my plan options for 2020. What do I need to know about choosing a plan for the coming year? Medicare Beneficiary Dear Beneficiary, Every year Medicare open enrollment runs from Oct. 15 through Dec. 7. This is the time of year when you can decide to stay […]

Infusing Love: Stand Up to Bullying

October 23, 2019

  October is National Bullying Prevention Month. For older moms, we think of bullying happening at school and after school in the neighborhood. But the unfortunate reality is that there is now the addition of bullying at home through social media and texts.聽 Historically, many have referred to bullying as a 鈥渃hildhood rite of passage.鈥 […]

Genentech Response to HFA-NHF Letter Regarding Particulate Matter in Hemlibra

October 17, 2019

On October 16, 2019, Genentech sent the following letter to HFA and NHF. Genentech鈥檚 letter responds to questions posed in the joint HFA-NHF letter of October 11, regarding reports of particulate matter in vials of Hemlibra. HFA and NHF will keep the bleeding disorders community informed as further information develops. Please note that HFA and […]


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