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Astellas Reports Fourth Death In Orphan Disease Gene Therapy Clinical Trial

September 14, 2021

The following is a news release from Astellas Pharma Inc. Read the release in full here. Astellas Pharma Inc. (TSE: 4503,聽President and CEO:聽Kenji Yasukawa, Ph.D., “Astellas”)聽reports聽that聽the ASPIRO clinical trial鈥痯articipant, who鈥痙eveloped a serious adverse event as described on聽September 1, passed away聽on September聽9. The cause of death is still pending. Astellas聽is gathering the relevant clinical information and […]

U.S. Blood Donations are Safe Under Current COVID-19 Screening Guidelines

June 3, 2021

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 […]

COVID-19 Resources and Updates

April 8, 2021

Updates During this time of rapidly-changing news surrounding the COVID-19, HFA聽will publish information and resources about to assist our bleeding disorders community. Vaccinations HFA Financial Assistance Other Resources Fraud Alerts Medical, Industry and Product News  

NORD Announces Findings on Available Orphan Products, Generics and Biosimilars for Rare Diseases

March 26, 2021

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 […]

FDA Advises Discontinued Use and Expanded Recall of ChloraPrep 3 mL Applicators

March 22, 2021

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 […]

Children鈥檚 National Hospital Rare Disease Institute and Takeda Partner to Standardize Care for Patients With Rare Diseases

March 10, 2021

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 […]

Hemophilia Federation of America Survey Shows Impact of Pandemic on Bleeding Disorders Community

February 18, 2021

In the spring of 2020, the usual way of life for the entire nation changed when the COVID-19 pandemic hit the United States. While Hemophilia Federation of America quickly responded by providing resources and information to the bleeding disorders community, the organization also wanted to better understand how the community was affected. HFA conducted an […]

HFA Hosts COVID-19 Vaccine Forum in English and Spanish

January 25, 2021

Watch the webinar Hemophilia Federation of America hosted an excellent line-up of experts, including well-known epidemiologists from NIH and UCLA, as well as leading HTC medical professionals, who answered questions about the COVID-19 vaccination in those with bleeding disorders during the COVID-19 Forum on Jan. 26, 2021. The panel included: 聽 鈥 Duc “Bobby” Tran, […]

WFH Announces COVID-19 Vaccination Guidance for People with Bleeding Disorders

December 22, 2020

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 […]

Global dosing hold in fitusiran trials initiated by Sanofi Genzyme to investigate new adverse events

November 6, 2020

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 […]

Stimate Recall – CSL Behring & Ferring Pharmaceuticals Announces Extension of Stimate Recall to Consumer Level

August 13, 2020

Ferring Pharmaceuticals announced it was extending the recall of Stimate (desmopressin) to the consumer/user level. Stimate is manufactured by Ferring Pharmaceuticals Inc. and is distributed and sold in the United States by CSL Behring. This marks an expansion of Ferring鈥檚 initial July 2020 plans to conduct a narrower pharmacy-level recall. Under a consumer-level recall, people […]

BD Announces Voluntary Recall of ChloraPrep™ 3 mL Applicator in Specific U.S. Territories and Countries

August 12, 2020

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 […]

A New Study of Hemophilia Occurrence Finds Many More Cases in the United States

July 9, 2020

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 […]

Von Willebrand Factor May Hold Key to COVID-19 Severity

July 9, 2020

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 […]

WFH & NHF Issue Joint Statement Regarding Two Deaths Reported in Orphan Disease Gene Therapy Clinical Trial

June 30, 2020

  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 […]

Racing Against Time, Medical Researchers, Life Science Companies and COVID-19 Survivors Launch National Campaign to Drive Blood Plasma Donation

June 18, 2020

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 […]

Voluntary Recall Notice: Saline Flush Syringes Recalled

April 21, 2020

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 […]

NVHR Applauds Latest Guidance from CDC Recommending Hepatitis C Screening for U.S. Adults

April 10, 2020

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. […]

Global Plasma Leaders Collaborate to Accelerate Development of Potential COVID-19 Hyperimmune Therapy

April 6, 2020

The following is from a press release featuring various industry partners. See the press release here. Partnership brings together world-leading plasma companies to focus on developing and delivering a hyperimmune immunoglobulin in the global fight against COVID-19 Biotest, BPL, LFB, and Octapharma have joined an alliance formed by CSL Behring and Takeda Pharmaceutical Company Limited […]

APLUS Statement on FDA Policy Changes Related to Blood and Plasma Donation

April 2, 2020

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 […]

Supplemental MASAC Statement Regarding Home Delivery and Refill Under State of Emergency Declaration

March 30, 2020

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 […]

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 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 […]

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)**: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 […]

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 […]

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. 聽Pfizer Inc. and BioNTech announced that the companies have agreed to a letter of intent regarding the co-development and distribution (excluding […]

Plasma Protein Therapeutics Association Updated Statement Regarding Coronavirus

March 17, 2020

The following is a statement provided by PPTA.聽 “Hello Stakeholders,聽 As previously noted, I am writing to inform you of an update to PPTA鈥檚 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 […]

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 […]

HFA Temporarily Halts All Staff Travel

March 11, 2020

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 […]

Bayer Statement on Availability of Factor VIII Products Amid 2019-nCoV (Novel Coronavirus)

March 5, 2020

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:

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 […]


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