Hemophilia Federation of America is a national nonprofit organization that assists, educates and advocates for the bleeding disorders community.
The following is a statement provided by MASAC, the National Hemophilia Foundation’s Medical and Scientific Advisory Council. Patients on home therapy receive regular shipments of clotting factor concentrate (CFC) or non-factor replacement therapy (e.g., emicizumab-kxwh) from their pharmacy providers, often on a monthly basis or as home supplies are depleted. Having an adequate supply of these […]
The following is a statement provided by Diplomat Specialty Infusion Group. “Living and working through a global pandemic — the coronavirus (COVID-19) — is an event none of us has experienced in our lifetime. As the situation continues to evolve, we want you to know that your Diplomat Specialty Infusion Group team will be here […]
On April 24, 2020, Hemophilia Federation of America extended its plan to have all staff who currently work in the Washington, D.C., office to work from home and to halt all staff travel through the end of May. HFA can assure the bleeding disorders community this will not interrupt communication — all phones and emails will […]
The following is information shared by Pfizer Inc. “To avoid adding to the demands on the healthcare system during this unprecedented crisis with COVID-19, we are pausing for three weeks the recruitment portion of our new and ongoing global interventional clinical studies. We are taking this action in the interests of public health, so that […]
The following is a letter provided by Spark Therapeutics. “In the unprecedented time of the COVID-19 (novel coronavirus) pandemic, Spark Therapeutics has closely monitored this evolving situation and taken steps to protect the well-being and safety of both our workforce and the patients and families we serve. In reference to our ongoing gene therapy clinical […]
The following is a letter provided by Octapharma. “As we all manage the challenges presented by the Coronavirus pandemic, Octapharma USA would like to remind you of our commitment to providing our customers life-saving therapies, manufactured to the highest standards of viral clearance and safety. Our staff continues to focus on maintaining production of all […]
I remember when Nick was much younger, we went to a meeting and one of the sessions was on transitioning from teen to adult. I remember thinking I didn’t need/want to go to that because we were nowhere near that time. I blinked and all of a sudden, we are at that time. And […]
Dear Addy, 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’m not sure how this will impact me. I’ve 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)**:Â 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® and XYNTHA® 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 […]
Hemophilia Federation of America is pleased to announce new dates for our Symposium: Aug. 24-26, 2020! We appreciate the community’s understanding and patience as we worked to find new dates for our Symposium. The increased intensity and severity of the COVID-19 pandemic made our decision to postpone Symposium an easy one: our community’s health […]
The following is a letter from Takeda.  “To the bleeding disorders community, 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 response measures to ensure bleeding disorder patients maintain access to the specialty drugs required to effectively manage their condition throughout this emergent situation. BioMatrix is leveraging its national footprint, detailed 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’s almost as if hemophilia is a distant memory. You run on autopilot — not thinking, just doing.  \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. 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:Â 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 2019-nCoV (novel coronavirus) outbreak.
A medida que la nación continúa respondiendo al brote de COVID-19, hemos tomado la difÃcil decisión de posponer el Simposio. Esperamos anunciar una nueva fecha para fines de la próxima semana. Si bien esperábamos que el COVID-19 no afectara este evento familiar querido, nuestra preocupación 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. HFA can assure the bleeding disorders community this will not interrupt communication — 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. While we had […]
I will never compare my bleeding disorder to my son’s — I will however share it with him. It wasn’t until I had a pretty significant brain bleed that I even paid attention to the fact that I have a bleeding disorder, that wasn’t 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 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® […]
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 2019-nCoV (novel coronavirus) outbreak:
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