Hemophilia Federation of America is a national nonprofit organization that assists, educates and advocates for the bleeding disorders community.
Dear Addy,聽 Due to the recent COVID-19 crisis, my employer has made drastic cuts to my work schedule and I am facing potential unemployment. As a person living with a bleeding disorder, I鈥檓 not sure how this will impact me. I鈥檝e been getting benefits through my employer for a while now, but without a job, […]
The following is information from the World Federation of Hemophilia. From the World Federation of Hemophilia Medical Advisory Board (MAB)* and the WFH Committee on Product Availability, Safety, and Supply (CPSSA)**:聽 For hemophilia patients currently treated with standard or extended recombinant half-life FVIII or FIX concentrates, FEIBA, FVIIa, or emicizumab: No reason to change the […]
The following is a press release from Genentech. “The World Health Organization has declared the COVID-19 (coronavirus) outbreak a global pandemic. We extend our heartfelt sympathies to everyone who has lost loved ones, to patients and healthcare professionals battling this devastating outbreak. With multiple countries implementing measures to slow the spread of the virus, based […]
The following is a press release from Pfizer. Pfizer Confirms BeneFIX庐 and XYNTHA庐 Remain Available Pfizer recognizes the public concern in relation to the COVID-19 pandemic, which continues to evolve. We are actively monitoring the situation across the globe, assessing the implications to our patients, colleagues and company, and taking actions to support continued health […]
The following is a letter from Takeda. 聽“To the bleeding disorders community,聽 As a global pharmaceutical leader, our top priority during the ongoing COVID-19 outbreak is to do all we can to make sure our medicines and services continue to reach the individuals who rely on them, while we protect the health of our employees, […]
The following is a statement provided by BioMatrix. “BioMatrix Specialty Pharmacy is closely monitoring the COVID-19 pandemic. Our organization has initiated proper聽response measures to ensure bleeding disorder patients maintain access to the specialty drugs required to effectively聽manage their condition throughout this emergent situation. BioMatrix is leveraging its national footprint, detailed聽business continuity plans, and extensive assets […]
There are times as a hemophilia parent where hemophilia is not at the forefront of your mind. Times where you can just live and enjoy every moment without worry. It鈥檚 almost as if hemophilia is a distant memory. You run on autopilot 鈥 not thinking, just doing. 聽\At these times hemophilia has absolutely no impact […]
The following is information provided by IXINITY. Read the full statement here. “The health and safety of individuals who rely on our products, their caregivers and community members, healthcare professionals, and our own team is of upmost importance to Medexus Pharma, the company behind IXINITY.聽 We want to reassure the community that we currently do […]
Many bleeding disorders community members are concerned about medical care, doctor visits, and how living with a bleeding disorder is being complicated by COVID-19. We address some of the most frequently asked questions: Q: We have an appointment scheduled with our HTC next week. Should we still go? A:聽All patients/caregivers should contact their HTC or […]
The following is a statement provided by Grifols. “As the situation with the novel coronavirus rapidly evolves, we wanted to inform you that Grifols is taking measures in line with recommendations from the World Health Organization (WHO) to help ensure the safety of our employees, donors, products, and the patient communities we serve. We have […]
The following is an excerpt from a press release published by Novo Nordisk. Novo Nordisk announced that two clinical trials in the concizumab phase 3 programme (explorer7 and 8) and one clinical trial in the phase 2 programme (explorer5) have been paused. The three clinical trials were investigating concizumab prophylaxis treatment in haemophilia A and […]
CSL Behring has added a statement to their website regarding the measures the company is taking in the wake of the聽2019-nCoV (novel coronavirus) outbreak.
A medida que la naci贸n contin煤a respondiendo al brote de COVID-19, hemos tomado la dif铆cil decisi贸n de posponer el Simposio. Esperamos anunciar una nueva fecha para fines de la pr贸xima semana. Si bien esper谩bamos que el COVID-19 no afectara este evento familiar querido, nuestra preocupaci贸n por la seguridad de nuestros asistentes, oradores y voluntarios, junto […]
On March 11, 2020, the World Health Organization announced that it is classing COVID-19 as a pandemic, and repeated its call for countries to take urgent and aggressive action to control the spread of the virus. Also on March 11, 2020, PPTA updated its statement on coronavirus and the safety of plasma protein therapies, noting […]
UPDATE: As of March 27, 2020, HFA staff will work from home until April 30, 2020. Beginning March 16, Hemophilia Federation of America staff who currently work in the Washington, D.C., office will begin working from home until further notice.聽 HFA can assure the bleeding disorders community this will not interrupt communication 鈥 all phones […]
Update on March 20: Symposium has been rescheduled for Aug. 24-26, 2020. Click here for more information. As the nation continues to respond to the outbreak of COVID-19 we have made the difficult decision to postpone Symposium. We hope to announce a new date by the end of next week. While we had hoped COVID-19 […]
UPDATE: As of March 27, 2020, HFA will halt travel for HFA staff until April 30, 2020. As the nation continues to respond to an outbreak of coronavirus (COVID-19), Hemophilia Federation of America has made the difficult decision to temporarily halt all travel plans of our staff throughout the month of March.聽 While we had […]
I will never compare my bleeding disorder to my son鈥檚 鈥 I will however share it with him. It wasn鈥檛 until I had a pretty significant brain bleed that I even paid attention to the fact that I have a bleeding disorder, that wasn鈥檛 until I was in my fifties and my son was an […]
As previously reported by HFA and NHF, Takeda announced the recall of two lots of VONVENDI von Willebrand factor (recombinant) 1,300 I.U. vials on Feb. 25, 2020. HFA and NHF recognize that recalls can be very unsettling for many in the bleeding disorders community. On Feb. 27, 2020, the patient organizations announced聽they had submitted a […]
The following is an excerpt from a press release from Aptevo Therapeutics. Read the press release in its entirety here. Aptevo Therapeutics Inc. , a biotechnology company focused on developing novel immuno-oncology therapeutics based on its proprietary ADAPTIR™ bispecific technology platform, announced it has completed the sale of its marketed recombinant factor IX therapeutic, IXINITY庐 […]
We’re excited to announce Hemophilia Federation of America President and CEO, Sharon Meyers, will be a presenter in an upcoming webinar with the National Organization for Rare Disorders. Fundraising is one of the top priorities of our member organizations, and as such, we are bringing expert speakers to discuss guidelines for relationship building and engaging […]
Bayer has issued the following statement regarding the supply and availability of Bayer’s Factor VIII/Hemophilia A products in the wake of the聽2019-nCoV (novel coronavirus) outbreak:
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 […]
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 […]
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, […]
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 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 […]
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 […]
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 […]
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 […]
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