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News & Perspectives

Coronavirus (COVID-19) • What HFA is Doing

March 23, 2020

Ver esta página en español   STATEMENTS AND UPDATES During this time of rapidly-changing news surrounding the COVID-19 outbreak, HFA will continue to publish updates and information about COVID-19 and its effects on the bleeding disorders community. MEDICAL NEWS INDUSTRY NEWS & PRODUCT AVAILABILITY NATIONAL, GOVERNMENT AND LOCAL NEWS RESOURCES FAQ: BLEEDING DISORDERS AND COVID-19 HFA […]

Diplomat Statement on COVID-19

March 27, 2020

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 […]

HFA Extends Halt on Travel and Work from Home for Staff

March 27, 2020

On March 27, 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 April 30, 2020.  HFA can assure the bleeding disorders community this will not interrupt communication — all phones and emails will continue […]

Pfizer Pauses Recruitment to Clinical Studies

March 26, 2020

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 […]

uniQure Announces Achievement of Target Patient Dosing in HOPE-B Pivotal Trial

March 26, 2020

The following is a press release from uniQure. uniQure N.V., a leading gene therapy company advancing transformative therapies for patients with severe unmet medical needs, announced it has achieved the targeted dosing of patients in the HOPE-B pivotal trial of etranacogene dezaparvovec (AMT-061), an investigational AAV5-based gene therapy incorporating the patent-protected FIX-Padua variant for the […]

Spark Temporarily Suspends New Enrollment in Study

March 26, 2020

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 […]

Octapharma Letter on Inventory During COVID-19

March 26, 2020

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 […]

Infusing Love: Transitioning from Teen to Adult

March 25, 2020

  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: Panicked and Confused

March 23, 2020

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, […]

World Federation of Hemophilia Recommendations for Hemophilia Patients

March 23, 2020

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)**:  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 […]

Hemlibra Supply and Coronavirus Update

March 21, 2020

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 […]

Pfizer Hemophilia Product Availability Status During COVID-19

March 21, 2020

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 […]

HFA Symposium Rescheduled for Aug. 24-26, 2020

March 20, 2020

  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 […]

Takeda Guidance on Novel Coronavirus and Product Supply

March 20, 2020

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, […]

BioMatrix Specialty Pharmacy Statement on Specialty Drug Availability

March 19, 2020

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 […]

ACTUALIZACIÓN # 2 DE CORONAVIRUS (2019-NCOV): DECLARACIÓN DE MASAC

March 19, 2020

El 3 de marzo de 2020, el Comité Asesor Médico y Científico (MASAC) de NHF publicó una carta a la comunidad sobre el brote de coronavirus en evolución. La carta de MASAC busca “proporcionar alguna orientación provisional para la comunidad de trastornos de sangrados”, dirige a las personas a la página web del CDC como […]

ACTUALIZACIÓN # 3 DE CORONAVIRUS (2019-NCOV)

March 19, 2020

El 11 de marzo de 2020, la Organización Mundial de Salud anunció que clasificaría a COVID-19 como una pandemia, y repitió su llamamiento a los países para que tomen medidas urgentes y agresivas para controlar la propagación del virus. También el 11 de marzo de 2020, PPTA PPTA actualizo su declaración sobre el coronavirus y […]

Infusing Love: Back to Reality

March 19, 2020

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 […]

Pfizer and BioNTech to Co-Develop Potential COVID-19 Vaccine

March 17, 2020

The following is information provided by Pfizer and BioNTech. On March 13, 2020, Pfizer issued a five-point plan calling on the biopharmaceutical industry to join the company in committing to collaboration to combat COVID-19.  Pfizer Inc. and BioNTech announced that the companies have agreed to a letter of intent regarding the co-development and distribution (excluding […]

IXINITY Statement on Product Availability

March 17, 2020

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 […]

COVID-19 and Bleeding Disorders: Frequently Asked Questions

March 17, 2020

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: All patients/caregivers should contact their HTC or […]

Plasma Protein Therapeutics Association Updated Statement Regarding Coronavirus

March 17, 2020

The following is a statement provided by PPTA.  “Hello Stakeholders,  As previously noted, I am writing to inform you of an update to PPTA’s statement regarding coronavirus and the safety of plasma protein therapies. This update provides clarity regarding the safety margins of plasma protein therapies manufactured by PPTA member companies and maintains the main […]

Grifols Update Regarding the Novel Coronavirus

March 16, 2020

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 […]

Novo Nordisk Pauses Clinical Trials Investigating Concizumab

March 16, 2020

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 […]

Sanofi Looks to Leverage Previous SARS Vaccine Information to Develop COVID-19 Vaccine

March 16, 2020

The following is a response provided by Sanofi. “At Sanofi, we have a simple purpose – to discover breakthrough medicines and vaccines to improve the lives of millions of people around the world. This drive to transform the practice of medicine has taken on increased urgency for everyone in the Sanofi family since the emergence […]

Novo Nordisk Letter to the Bleeding Disorders Community on COVID-19

March 16, 2020

The following is a letter provided by Novo Nordisk.  “You’ve come to know us as a part of the fabric of the hemophilia community for more than 30 years, always working to make things better for everyone affected by rare bleeding disorders.  We know this is a challenging time for all as with the World […]

CORONAVIRUS (COVID-19) • QUÉ ESTÁ HACIENDO HFA

March 13, 2020

Estamos haciendo todo lo posible para actualizar esta página lo más rápido posible. Para obtener la información más actualizada, consulte la página en inglés de COVID-19. Declaraciones y Actualizaciones Durante este tiempo de noticias que cambian rápidamente en torno al brote de COVID-19, HFA continuará publicando actualizaciones e información sobre COVID-19 y sus efectos en […]

CSL Behring Update COVID-19

March 13, 2020

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.

El Simposio Anual de HFA ha Sido Pospuesto

March 13, 2020

A medida que la nación continúa respondiendo al brote de COVID-19, hemos tomado la difícil 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 […]

Coronavirus (2019-nCoV) Update #3

March 12, 2020

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 […]


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