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RECALL NOTICE: VOLUNTARY RECALL MONONINE COAGULATION FACTOR IX (HUMAN)

January 21, 2021

CSL Behring has announced a voluntary聽pharmacy level聽product recall of聽one batch of Mononine Coagulation Factor IX (Human), a plasma-derived product used to treat hemophilia B. CSL Behring鈥檚 notification states, 鈥淧atients can continue to use product they may have. Although the potential for safety risk to patients is considered low, it cannot be fully excluded.鈥 The affected […]

HFA Partners with RareDiseaseLive to Share On-Demand Video

January 20, 2021

Now Available On-Demand Hemophilia A, also called factor VIII (FVIII) deficiency or classic hemophilia, is a genetic disorder caused by missing or defective factor VIII, a clotting protein. This means that the blood does not clot normally. When blood cannot clot properly, excessive bleeding (external and internal) occurs after any injury or damage. Patients and […]

Infusing Love: Un a帽o nuevo saludable

January 13, 2021

隆Hola, mis queridas madres y Feliz a帽o nuevo para todas! 驴Has notado el cambio en las preferencias en alimentos en los 煤ltimos a帽os? Hoy les hablar茅 de lo beneficioso que es comer saludable.聽 De porque tener h谩bitos alimentarios saludables nos alarga la vida para disfrutar a nuestras futuras generaciones. Nuestros h谩bitos alimentarios, en gran medida, […]

STATE OF THE STATES: Fall 2020

January 11, 2021

State Election Results Republican dominance in state elections could hinder new Democratic health initiatives Going into the 2020聽election, Democrats expected a 鈥渂lue wave鈥 at the state level that would build upon substantial gains in 2018, when they won back most of the record number of legislative seats they had lost since 2010.聽 Democrats had high […]

HFA Statement of Unity

January 8, 2021

Hemophilia Federation of America is appalled by the recent violence at the United States Capitol. Each time our community has visited the Capitol to advocate on behalf of bleeding disorders, it has been an honor and a privilege to be a part of the democratic process set forth in the Constitution. However, the events showed […]

Infusing Love: A Pillar of Strength

January 6, 2021

The staff of Hemophilia Federation of America and Infusing Love: A Mom’s View bloggers extend condolences to Maryann on the death of her son, Max. There are times as a hemophilia mom that you feel as though you can handle anything, like you could take on the world and make it a better place. Then there […]

Washington Wire: December 2020

January 5, 2021

As we enter the new year, there are good reasons to hope the U.S. may soon round the corner on COVID-19. In the meantime, though, we all still need to follow the guidelines of our public health authorities: stay home if sick, practice social distancing, avoid indoor settings, wear masks, and wash our hands. Please […]

Infusing Love: Cirug铆a en Tiempos de Pandemia

December 30, 2020

隆Saludos nuevamente a todas las extraordinarias mam谩s de nuestra comunidad, un fuerte abrazo desde la distancia! Para los que no me conocen, tengo un ni帽o de 11 a帽os con hemofilia A, que se llama Iv谩n Manuel.聽Hoy les escribo, pensando en los diferentes retos que esta pandemia nos ha tra铆do a nuestras vidas. Desde los estudios […]

WFH Announces COVID-19 Vaccination Guidance for People with Bleeding Disorders

December 22, 2020

The World Federation of Hemophilia, National Hemophilia Foundation and the聽European Haemophilia Consortium have announced COVID-19 vaccination guidance for people with bleeding disorders. The following is from a press release from WFH. Read the press release in its entirety here. People with bleeding disorders are not at greater risk of contracting COVID-19 or developing a severe […]

Dear Addy: 2020 Election

December 21, 2020

Dear Addy, I鈥檓 seeing a lot about the 2020 Election results and it is all very confusing. Does HFA have a comprehensive resource that I can use to better understand the outcomes of this year鈥檚 election. Signed, Dear Constituent, Due to COVID-19, in some states the manner in which people voted may have changed to […]

uniQure Announces Clinical Hold on Hemophilia B Gene Therapy Program

December 21, 2020

The following is an excerpt from a press release from uniQure. Read the update in its entirety聽here. Today uniQure announced a clinical hold by the U.S. Food and Drug Administration (FDA) in its聽phase III HOPE-B: Trial of AMT-061 in Severe or Moderately Severe Hemophilia B Patients. Per uniQure鈥檚 statement: 鈥淭he clinical hold was initiated following […]

Sanofi to Resume Dosing in Fitusiran Clinical Studies in the U.S.

December 11, 2020

The following is a press release from Sanofi. Read the press release in its entirety here. Sanofi will resume fitusiran dosing in ongoing U.S. adolescent and adult clinical studies. Fitusiran is an investigational, small interference RNA therapy in development for the treatment of people with hemophilia A or B, with or without inhibitors. Sanofi鈥檚 first […]

Pfizer and Sangamo Announce Updated Results in Hemophilia A Gene Therapy

December 10, 2020

The following is an excerpt from a press release from Pfizer. Read the full press release here. Pfizer Inc. and Sangamo Therapeutics Inc., a genomic medicines company, announced updated follow-up data from the Phase 1/2 Alta study of giroctocogene fitelparvovec (SB-525 or PF-07055480), an investigational gene therapy for patients with severe hemophilia A. These data […]

uniQure Presents Data from HOPE-B Pivotal Gene Therapy Trial in Patients with Hemophilia B at ASH Annual Meeting

December 10, 2020

The following is an excerpt from a press release from uniQure. Read the full press release here. uniQure,聽a gene therapy company advancing transformative therapies for patients with severe medical needs, today announced the late-breaking presentation of initial data from its pivotal, Phase III HOPE-B gene therapy trial of etranacogene dezaparvovec, an investigational adeno-associated virus five […]

Infusing Love: 驴El Amor Da Empoderamiento?

December 9, 2020

Hola, mis amigas de Infusing Love Moms Blog. Soy Ana, madre de un hijo con hemofilia Tipo B, deficiencia de Factor IX moderado y vivo en El Paso, Texas. Hoy quiero platicar con ustedes de el amor, el agradecimientoy el perd贸n. El amor es, quiz谩, el sentimiento mas hermoso que el ser humano pueda experimentar. […]

Word From Washington: Patient Groups Urge U.S. District Court to Prevent Discrimination Against LGBTQ and Limited English Proficiency Patients

December 9, 2020

More than a dozen patient groups representing millions of Americans with serious and chronic health conditions are urging the U.S. District Court for the Southern District of New York to preserve protections in the Affordable Care Act (ACA) for lesbian, gay, bisexual, transgender and queer (LGBTQ) patients receiving health care services and restore translation notices […]

Washington Wire: November 2020

November 30, 2020

HFA鈥檚 virtual 2020 Patient Fly-in took place over the week of Nov. 16.聽 Sixteen community members connected with their lawmakers via phone and Zoom to describe what it鈥檚 like to live with a bleeding disorder 鈥 and to explain what people in this community need in terms of quality, affordable health coverage. Fly-in participants also […]

HFA Expresses Gratitude to Bleeding Disorders Community

November 25, 2020

With the pandemic and economic crisis still very present in our lives, a message of gratitude could be seen as a clich茅. Instead, they are at the core of my emotions as I tell you how thankful I am for this community. It is with sincerity that I wish you a happy Thanksgiving and express […]

Infusing Love: Boys to Men

November 25, 2020

  I have been 鈥淚nfusing Love鈥 into my son Marques for the past 18 years! I have not only been infusing him with factor, so his blood clotting levels are normal, but I have tried to infuse him with the education he needs to live a long life with hemophilia. I pray! As hemophilia moms, […]

Pfizer Doses First Participant In Phase 3 Study for People With Severe Hemophilia A and B with or Without Inhibitors

November 25, 2020

The following is from a press release from Pfizer. Read it in its entirety here. Pfizer Inc. announced that the first participant has been dosed in the Phase 3 BASIS study of marstacimab (PF-06741086), an anti-tissue factor pathway inhibitor (anti-TFPI) being evaluated for the treatment of people with severe hemophilia A or B, with or […]

uniQure Announces Positive Data from the HOPE-B Pivotal Trial Gene Therapy in Patients with Hemophilia B

November 25, 2020

The following is an excerpt from a press release from uniQure. Read the press release in its entirety here. uniQure N.V.,聽a gene therapy company advancing transformative therapies for patients with severe medical needs, announced positive top-line data from its pivotal, Phase III HOPE-B gene therapy trial of etranacogene dezaparvovec, an investigational adeno-associated virus five (AAV5)-based […]

Dear Addy: ACA for 2021

November 23, 2020

Dear Addy, I know that open enrollment for health insurance begins Nov. 1, 2020. At the same time, I鈥檓 hearing about a Supreme Court case that could overturn the Affordable Care Act (ACA)! As a person with a bleeding disorder, what should I do about health insurance for 2021? Signed, Anxious About Insurance Dear Anxious, […]

HFA Recognizes 2020 Congressional Champions; Hosts Virtual Fly-In

November 18, 2020

Due to ongoing concerns regarding public gatherings and the impact COVID-19 had on in-person legislative visits, Hemophilia Federation of America restructured its annual Patient Fly-In and Congressional Reception experience to an online campaign that took place over the course Nov. 16-20. With that in mind, Congressional visits by patients took place virtually over Nov. 19-20. […]

Patient Groups Urge U.S. Supreme Court to Prioritize Patients and Uphold Health Care Law

November 9, 2020

Protections for Pre-Existing Conditions and Coverage Standards at Risk Twenty patient groups representing millions of Americans with pre-existing conditions are urging the U.S. Supreme Court to prioritize patient protections, including those for people with pre-existing conditions, when it hears oral arguments Tuesday in the case of California v. Texas (previously Texas v. United States). 聽The […]

Global dosing hold in fitusiran trials initiated by Sanofi Genzyme to investigate new adverse events

November 6, 2020

The following is information from the World Federation of Hemophilia, European聽Hemophilia Consortium, and the National Hemophilia Foundation. The WFH, EHC and NHF have learned of and subsequently confirmed a decision by Sanofi Genzyme to initiate a voluntary sponsor-led global dosing hold on its full clinical development program for fitusiran due to the identification of new […]

Okay, So What Can We Do?

November 3, 2020

“Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has.” -Margaret Mead To find an example of the type of group Margaret Mead speaks about in her famous quote, look no further than our bleeding disorders community. From the 1990s with the passage […]

With Patient Perspectives in Mind, ICER Evaluates Hemophilia Therapies

October 30, 2020

On October 30th, 2020, the Institute for Clinical and Economic Review (ICER) held a public meeting to discuss its evidence report on therapies for hemophilia A. ICER is an independent and non-partisan research organization that evaluates the clinical and economic value of prescription drugs, medical tests, and other healthcare and healthcare delivery innovations. For this […]

Washington Wire: October 2020

October 30, 2020

Open Enrollment begins for 2021 insurance plans Open Enrollment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 for you. […]

Infusing Love: My Quarantine Teaching Experience

October 28, 2020

Remote learning causes concerns for students with disabilities.聽Because of COVID-19, I found myself using technology as I teach and learn.聽I used to take for granted toilet paper, paper towel, hand sanitizer, rubber/paper gloves, rubbing alcohol, bleach and masks because it was always there at my reach. Now I have found myself shopping for these things. […]

Infusing Love: The Other Side Effects

October 21, 2020

There are new bleeding disorder side effects cropping up all the time. By side effects, I mean the extraneous things we have to manage such as insurance, genotyping and product choice. In a time before all the advancements, a side effect was learning to be an IV nurse and find a vein on a toddler,聽 […]


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