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Coronavirus (2019-nCoV) Update #2: MASAC Statement

March 5, 2020

On March 3, 2020, NHF鈥檚 Medical and Scientific Advisory Committee (MASAC) published a letter to the community regarding the evolving coronavirus outbreak. MASAC鈥檚 letter seeks to 鈥減rovide some interim guidance for the bleeding disorders community,鈥 directs people to the CDC website as a reliable source of information, and highlights some information regarding product supply and […]

Infusing Love: Durante la Adversidad

March 5, 2020

Hola a todas las lindas mamas de este blog, mi nombre es Lupe Torres, vivo en la ciudad de Las Vegas, NV. Soy mam谩 de tres hermosos hijos. Tengo una hija de 23 a帽os, un var贸n de 24 y mi m谩s peque帽o de 18 a帽os. Mi hija Michelle de 23 a帽os fue diagnosticada con VWD […]

HFA Symposium & the Impact of Coronavirus

March 4, 2020

SYMPOSIUM 2020 HAS BEEN POSTPONED鈥擱EAD THE ANNOUNCEMENT HERE As the nation responds to an outbreak of a respiratory illness caused by a novel coronavirus (COVID-19), HFA is closely monitoring the situation and evaluating steps that need to be taken to best prepare to host its upcoming annual patient Symposium on April 23-25, 2020 in Baltimore, […]

Patient Groups Applaud Supreme Court鈥檚 Decision to Take Up Health Care Case

March 2, 2020

On March 2, 2020, the U.S. Supreme Court announced that it will hear an appeal from the Fifth Circuit ruling in Texas v. United States, a case challenging the constitutionality of the Affordable Care Act. In earlier phases of that litigation, a federal district court and an appellate court had ruled that the ACA鈥檚 individual […]

Genentech Statement on Hemlibra Supply Amid 2019-nCoV (Novel Coronavirus)

February 28, 2020

Genentech has issued the following statement regarding the supply and availability of Hemlibra in the wake of the聽2019-nCoV (novel coronavirus) outbreak: Please note that HFA does not recommend, endorse or make any representation about the efficacy, appropriateness or suitability of any specific products, treatments, or opinions. If you have any questions or concerns about your […]

Washington Wire: February 2020

February 28, 2020

Click Below to Translate Page to Spanish. Federal insurance rules proposed for 2021 Plan Year. Every year, the U.S. Department of Health and Human Services publishes a federal rule (the 鈥淣otice of Benefits and Payment Parameters,鈥 or NBPP) to govern operations of the ACA marketplaces and ACA health plans for the coming year. The 2021 […]

JOINT STATEMENT ON RECALL OF VONVENDI LOTS

February 27, 2020

Takeda announced the recall of two lots of VONVENDI vonWillebrand factor (recombinant) 1,300 I.U. vials on February 25, 2020. HFA and NHF recognize that recalls can be very unsettling for many in the bleeding disorders community. We are in communications with Takeda to obtain additional detailed and timely information regarding the events that led up […]

Takeda Issues Pharmacy Level Recall of VONVENDI

February 26, 2020

Late yesterday (February 25, 2020), Takeda announced a pharmacy-level recall of two lots of VONVENDI von Willebrand factor (recombinant) 1,300 IU vials. Takeda鈥檚 announcement stated that 鈥淎lthough both lots met all acceptance criteria, Takeda is issuing a voluntary recall out of an abundance of caution. Takeda believes that despite this voluntary recall that [sic] there […]

Dear Addy: Excused School Absence

February 18, 2020

Dear Addy, My child wants to attend our state’s Advocacy Day, but she has a limited number of excused absences. I want her to learn how to advocate for herself and the bleeding disorders community, as well as to see democracy in action. Can you offer guidance for working with her school to allow the […]

How FDA is Putting the Patient Voice at the Forefront of Gene Therapy Clinical Trials for Hemophilia

February 12, 2020

By Najat Bouchkouj, M.D., Bindu George, M.D., and Karen Jackler, MPH A person with hemophilia can experience aspects of their disease that even the most qualified doctors and scientists can鈥檛 fully appreciate. This is why the Center for Biologics Evaluation and Research at the Food and Drug Administration is working to hear and understand the […]

Infusing Love: Camp Time

February 12, 2020

Even though I have never attended camp, and had no idea what it was all about, I did not want my son, my only child, to miss out on the experience. The first time Omar attended camp; he was just 7 years old. He looked so sad and didn鈥檛 want to stay, but we all […]

Coronavirus (2019-nCoV) Outbreak Update

February 6, 2020

The U.S. Centers for Disease Control and Prevention (CDC) are closely monitoring an outbreak of respiratory illness caused by a new coronavirus first identified in Wuhan, China. The new coronavirus (scientific identifier: 2019-nCoV) has resulted in thousands of confirmed cases in China; additional cases have been identified in other countries. As of February 3, 2020, […]

Infusing Love: D铆a de Acci贸n de Gracias en mi Hogar

February 5, 2020

The English version of this Infusing Love: A Mom’s View blog can be found below.聽   En Puerto rico se celebra el D铆a de Acci贸n de Gracias (Thanksgiving) al igual que en los Estados Unidos continentales. La verdad es que todos los d铆as festivos federales se celebran, pero 茅ste lo hemos 鈥渃riollizado鈥 en gran medida. […]

Washington Wire: January 2020

January 31, 2020

Click Below to Translate Page to Spanish. HFA and NHF co-hosted a Safety Summit in Washington, D.C., over three days at the end of January. The summit was convened in recognition and response to community concerns arising from a series of drug safety reports in 2019. Those safety incidents rocked the hemophilia community 鈥 and […]

Infusing Love: Seeing Life Differently

January 30, 2020

My son鈥檚 pediatric ophthalmologist tells a story about a little girl who was about 4 or 5 years old who came in for an eye appointment due to some concerns. It was determined the little girl had severe double vision. She was seeing double of almost every single object in her line of sight. The […]

HFA Announces Keynote Speaker for 2020 Symposium: Lindsay Vos

January 28, 2020

Hemophilia Federation of America is excited to bring inspirational speaker, Lindsay Vos of Brownstown, Mich., to Baltimore as our keynote speaker for 2020 Symposium. Vos鈥檚 story began when she spent most of her life suffering from migraines and eventually experiencing left-sided weakness and slurred speech. But doctors dismissed her symptoms as anxiety whenever she sought […]

Infusing Love: When Hemophilia Makes You Feel Different

January 23, 2020

My son, Jackson, is nearing his 12th birthday. For our family, hemophilia is genetic. so Jackson has been dealing with his diagnosis since birth. We鈥檝e been very open about his bleeding disorder since he was little; sharing and educating our family, friends and teachers. We are fortunate in that he can feel a bleed before […]

Be Savvy Online

January 23, 2020

Hemophilia Federation of America is aware of a drastic increase in social media targeting members of the bleeding disorders community on a number of initiatives. Wanting the best for the community, HFA encourages the community to be vigilant and cautious when interacting on social media platforms. While HFA respects the rights of each individual to […]

Dear Addy: Reporting Insurance Issues

January 21, 2020

Dear Addy, I鈥檓 already experiencing issues with my health insurance, despite being less than a month into the new year. What resources does HFA have for reporting these issues? Signed, Frustrated Consumer Dear Frustrated, HFA understands your frustration and wants to hear from you. We strongly encourage you to reach out to HFA with stories […]

Word From Washington: Patient Groups Urge Supreme Court to Swiftly Take Up Health Care Case

January 16, 2020

Patient and health advocacy groups representing millions of Americans with pre-existing conditions filed an amicus curiae or friend of the court brief urging the U.S. Supreme Court to immediately take up the case of Texas v. United States. The case is the latest court challenge to the health care law known as the Affordable Care […]

Infusing Love: What a Decade it has Been

January 14, 2020

Wow, it鈥檚 the end of the year and the end of a decade! I am not leaving this decade the way I began. My decade began with a 7-year-old son with severe hemophilia A, who I wouldn鈥檛 allow to play recreational sports. I was pregnant with twins, one being a boy, unsure if I was […]

Word From Washington: 聽24 Patient Groups Endorse Expedited Supreme Court Review of Affordable Care Act Case聽

January 3, 2020

Twenty-four organizations representing millions of patients strongly support the petitions filed today by state attorneys general and by the U.S. House of Representatives that seek expedited U.S. Supreme Court review of last month鈥檚 Texas v. United States ruling.聽 The coalition issued the following statement:聽 鈥淥ur organizations, representing millions of individuals and families affected by chronic […]

Hemophilia Federation of America Chooses Interim President and CEO to Lead the Charge

January 2, 2020

WASHINGTON, D.C. 鈥 Hemophilia Federation of America announced the board of directors has selected Sharon Meyers, M.S., CFRE, as president and chief executive officer, effective Jan. 16, 2020. Meyers is a strategic, energetic, action-oriented nonprofit leader who has been part of HFA鈥檚 leadership team for more than four years, most recently serving as the vice […]

Washington Wire: December 2019

December 29, 2019

On December 18, 2019, the U.S. Fifth Circuit Court of Appeals issued its long-awaited ruling in Texas v. United States, a case challenging the constitutionality of the Affordable Care Act. The 5th Circuit ruling upholds (in part) an earlier lower court decision that declared the ACA to be unconstitutional, due to Congress鈥 2017 enactment of […]

FDA Communication: Important Information for Potential Donors of Blood and Blood Products

December 20, 2019

The following is an excerpt from a recent communication from the United States Food and Drug Administration. Read the full communication here: The Food and Drug Administration (FDA) would like to remind the public that individuals who have ever tested positive for HIV (the virus that causes AIDS) should not donate blood, because of the […]

Word From Washington: December 18, 2019 Ruling in Texas v. United States, Update #2

December 20, 2019

Last Wednesday evening, the U.S. Fifth Circuit Court of Appeals issued a ruling in Texas v. United States, a case challenging the constitutionality of the Affordable Care Act. The bleeding disorders community has been anxiously awaiting this pivotal court decision. HFA staff want to update you on what is known at this point. The 5th […]

Word From Washington: December 18, 2019 Ruling in Texas v United States

December 18, 2019

Patient advocacy groups representing millions of Americans with serious health conditions decried a December 18th聽ruling from the Fifth Circuit U.S. Court of Appeals in Texas v. United States, a case concerning the constitutionality of the Affordable Care Act. The Fifth Circuit ruling strikes down the ACA鈥檚 individual mandate and sends the case back to the […]

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 […]


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