Hemophilia Federation of America is a national nonprofit organization that assists, educates and advocates for the bleeding disorders community.
On December 1, the CDC recently released a new Key Findings summary of a recent scientific publication of women and girls who have hemophilia. The CDC reports, 鈥淗emophilia primarily affects men, but聽women can have hemophilia, too. It was once thought that only men could have hemophilia and women could only聽pass on the gene聽that causes hemophilia […]
Read original news release from the National Institutes of Health: U.S. Blood Donations are Safe Under Current COVID-19 Screening Guidelines A new study by researchers at the National Institutes of Health and their colleagues has found that SARS-CoV-2, the virus that causes COVID-19, does not appear to pose a threat to the safety of the […]
The following is an excerpt from a press release from Sanofi. Read the full press release here. The National Organization for Rare Disorders (NORD庐)聽announced the聽findings of a new study that details聽the聽number聽of聽orphan products,聽generics and biosimilars聽available to treat rare diseases.聽NORD聽commissioned聽Avalere to conduct聽the聽analysis聽to examine if聽laws and regulations are聽helping to聽bring new treatments聽to market聽for rare disease patients.聽 According to the聽report,聽the […]
The following is information from the U.S. Food and Drug Administration. Read the full press release here. The U.S. Food and Drug Administration (FDA) advises health care professionals not to use ChloraPrep 3 mL applicators manufactured by Becton, Dickinson and Company (BD) due to microbial contamination risks. The drug was distributed globally and is labeled […]
The following is an excerpt from a press release from Takeda. Read the press release in its entirety here. Children鈥檚 National Hospital and Takeda Pharmaceutical Company Limited announce the creation of the Rare Disease Clinical Activity Protocols (Rare-CAP) program, which will establish a networked system for the development, dissemination and curation of protocols to help […]
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 […]
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 […]
NOTE:聽The recall does not apply to any states in the United States, it only applies to the U.S. territories of Puerto Rico, Guam, U.S. Virgin Islands, Northern Mariana Islands and American Samoa. Click Below to Translate Page to Spanish. BD (Becton, Dickinson and Company), a global medical technology company, announced a voluntary recall on June […]
The following is an announcement from the Centers for Disease Control and Prevention. Hemophilia is an inherited bleeding disorder in which the blood does not clot properly due to a lack or decrease in a protein called clotting factor. The two most common types of hemophilia are hemophilia A, which is due to a lack […]
The following is an article that appeared on Pharmacytime.com by Sara Karlovitch. See link below for original press release from St. Petersburg University. The severe course of coronavirus disease 2019 (COVID-19) may be tied to the von Willebrand factor (VWF), according to a new hypothesis out of St. Petersburg University. VWF is one of the […]
The following is information from the World Federation of Hemophilia. A joint World Federation of Hemophilia (WFH) and National Hemophilia Foundation (NHF) statement* is issued on two deaths reported in orphan disease gene therapy clinical trial (*on behalf of the WFH Coagulation Product Safety, Supply, and Access Committee): We have become aware of two […]
The following is an excerpt from a press release from CSL Behring. Read the press release in its entirety here. 鈥淭he Fight Is In Us鈥 Campaign Seeks to Mobilize COVID-19 Survivors to Accelerate the Development of Potentially Lifesaving Therapies A coalition of world-leading medical and research institutions, blood centers, life science companies, technology companies, philanthropic […]
The following is information from BD. BD is conducting a voluntary medical device recall for multiple lots of the BD PosiFlush™ SF (Sterile Field) Saline Flush Syringe 10mL identified in the Table above and Attachment A. This product has been confirmed to exhibit holes in the packaging, which impacts package integrity and potentially compromises a […]
The following is a press release from the National Viral Hepatitis Roundtable. The latest guidance from the CDC is an important step in the fight for hepatitis C elimination, but increased federal funding for viral hepatitis still needed. The National Viral Hepatitis Roundtable, a national coalition working to eliminate viral hepatitis, today applauded the U.S. […]
Today the FDA released several new guidance documents with permanent and temporary (during the COVID-19 emergency) changes to several policies related to blood and plasma donation.聽 HFA has signed on to a statement with coalition partners from the American Plasma Users Coalition reiterating APLUS鈥檚 longstanding position that complex blood safety policies such as those related […]
The following is a statement provided by MASAC,聽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 鈥 the coronavirus (COVID-19) 鈥 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 […]
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 […]
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 […]
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 […]
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 […]
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, […]
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 […]
The following is a press release from the FDA. Read the press release on the FDA website聽here. Scientists at the U.S. Food and Drug Administration developed a technique that enables them to determine whether immune system cells called dendritic cells appear primed to trigger the production of antibodies against Factor VIII (FVIII) products used to […]
The following is an excerpt from a FDA MedWatch Safety Alert. Read the full safety announcement here. FDA has received reports that the use of Mavyret, Zepatier, or Vosevi to treat chronic Hepatitis C in patients with moderate to severe liver impairment has resulted in rare cases of worsening liver function or liver failure. FDA […]
The following is an alert from BD Medical. Read the full consumer letter with detailed product information聽here. 聽 Out of an abundance of caution and in the interest of public health, BD is voluntarily recalling certain lots of BD PosiFlush™ Heparin Lock Flush and BD™ Pre-Filled Normal Saline Flush syringes due to a potential for […]
The National Hemophilia Foundation’s Medical and Scientific Advisory Council (MASAC) has released a safety information update about Emicizumab (Hemlibra), a new subcutaneous treatment for hemophilia A patients with inhibitors. This update has been released following the first report of an anti-drug antibody to Emicizumab. MASAC鈥檚 update issues recommendations for providers and patients in case of […]
Study Shows Sexual Intimacy Correlates With More Bleeds The following is an excerpt from Hemophilia News Today. Read the entire article here. Researchers report that聽hemophilia聽interferes with patients鈥 sexual activity and is linked to worse health status. The study titled 鈥淪exual Health in Patients with Hemophilia; The Insights from the Patient Reported Outcomes, Burdens and Experiences […]
MedWatch, the FDA safety information and adverse event reporting program released a safety alert聽on December 5, 2017 outlining a voluntary recall by聽Simple Diagnostics of聽three lots of Pharmacist Choice Alcohol Prep Pads due to the lack of sterility assurance and other quality issues. The affected lots are: SD2070421201 (Exp. 12/2019) SD2070420925 (Exp. 09/2019) SD2070420601 (Exp. 12/2019) […]
The New England Journal of Medicine has published two articles and an editioral in conjunction with the International Society of Thrombosis and Haemostasis meeting being held in Berlin, Germany, July 8-13, 2017. The articles include information on novel hemophilia treatment products currently in clinical trial. Click on the links below to read the articles in […]
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