Donate

News & Perspectives

Update #2: Zika Virus & Blood Supply

August 10, 2016

For the past few months, HFA has been monitoring the progression of the Zika virus in the United States. Since the first reported cases of Zika virus reaching the United States in January, there have been thousands of additional cases. According to the Centers for Disease Control (CDC), the follow cases and causes of transmission […]

FDA Requests Comments Regarding MSM Donor Deferral Policy

August 10, 2016

In January of this year, the Food and Drug Administration (FDA) revised its donor deferral policy surrounding men who have sex with men (MSM). On July 26, 2016, the FDA issued another request for comments regarding the MSM donor deferral policy. Current policy permits blood donations by MSM provided that the donor has not had […]

Infusing Love: Speaking Pok茅mon

August 10, 2016

Thirteen years ago, I had to learn a new language. Like any new language learning, it began with learning how to spell. Our day-old son was cradled in my arms when the phone rang in my hospital room. Thomas had been bleeding from his circumcision site since the day before, but I honestly wasn鈥檛 overly […]

First FDA-Approved Recombinant von Willebrand Factor, Vonvendi, Now Available for von Willebrand Disease

August 9, 2016

The following is excerpted from a press release from Baxalta, now a part of Shire. Read the press release in it’s entirety here. Shire has announced that Vonvendi [von Willebrand factor (Recombinant)], indicated for the on-demand treatment and control of bleeding episodes in adults (age 18 and older) diagnosed with von Willebrand disease, is now […]

Biogen Names New Spin Off, Bioverativ; Aiming for Early 2017 Launch

August 9, 2016

The following is an excerpt from FierceBiotech.com To read the article in full, click聽here. Biogen previously announced its plan to spin out its blood disorder products and candidates into a separate publicly traded company. The new company will be known as Bioverativ and is slated to launch in early 2017 and trade on the Nasdaq […]

Dear Addy: Back to School

August 8, 2016

Dear Addy, I’m preparing for my first year of college, which also means managing my hemophilia without my parents and local HTC. How do I make this a smooth transition? Is there anything I need to do before I get to school? Sincerely, Back to School Jitters ________________________________________________________________________________ Dear Jitters, Congratulations on this exciting transition. […]

Shire Discontinues Hemophilia Gene Therapy Drug Development

August 4, 2016

The following is an excerpt from xconomy.com. To read the article in full, click here. On a conference call Tuesday, Shire聽CEO Flemming Ornskov said that the Dublin and Lexington, MA, company has discontinued development of BAX 335, an experimental gene therapy for hemophilia B.聽Prior to the merger of Baxalta and Shire, Baxalta had indicated plans […]

Infusing Love: Careful What You Say

August 3, 2016

I had a 鈥淗emo Mom鈥 moment of synchronicity earlier this summer. In my last Infusing Love post, 鈥淪uperheroes Need Rest Too,鈥 I shared a story about my oldest son, Marques, being in the hospital six years ago with a port infection while I was also taking care of his four 聽-month-old twin siblings. Marques eventually […]

Fit Factor: The Importance of a Whole Grain Diet

August 1, 2016

For many of us, our diet takes a back seat when our lives become busy and stressful. This leads us to consume more processed meals and snacks on the go. While these foods can be cheap and convenient, they have also been stripped of some of their nutritional value. Whole grain products rather than foods […]

Genentech Presents Latest Data on Emicizumab (ACE910)

July 29, 2016

Note: The below is an edited version of an article originally published on BusinessWire.聽 The original article can be read in their entirety聽here. The latest data from an ongoing Japanese Phase I/II study of Emicizumab were presented earlier this week at the World Federation of Hemophilia 2016 World Congress.聽 Emicizumab (a product being developed by […]

Intern Introspective: That’s a Wrap for Eric

July 29, 2016

Earlier this summer we welcomed our summer policy & government relations interns to our DC office. Eric and Cami are part of the bleeding disorders community and were chosen to participate in a 10-week internship because of their leadership qualities and interest in the field of policy and advocacy. Throughout the summer, Eric and Cami […]

BioMarin Releases Results of Phase 1/2 Study of Gene Therapy Treatment

July 28, 2016

Note: The below is an edited version of a press release issued by BioMarin Pharmaceutical Inc. The original release can be read in its entirety聽here. BioMarin Pharmaceutical announced today positive interim results of an open-label Phase 1/2 study of BMN 270, an investigational gene therapy treatment for severe hemophilia A. Nine patients with severe hemophilia […]

Sangamo BioSciences Announces New Gene Therapy Clinical Development Program

July 28, 2016

Note: The below is an edited version of an article originally published on PR Newswire. The original release can be read in its聽entirety聽here. Sangamo BioSciences, Inc. announced the presentation of preclinical data that supports the clinical development of its new proprietary gene therapy for the treatment of hemophilia A. This new therapeutic comprises an adeno-associated […]

uniQure Presents Updated Clinical Data in Patients with Severe Hemophilia B

July 28, 2016

Note: The below is an edited version of an article originally published on Globe Newswire. The original release can be read in its entirety聽here. uniQure N.V. yesterday announced updated clinical data from its ongoing Phase I/II trial of AMT-060, its proprietary, investigational gene therapy, in patients with severe hemophilia B.聽 The updated data show that […]

Hepatitis: Not Just For Men

July 28, 2016

I have severe factor 1 deficiency (afibrinogenemia) and have been Hepatitis C (HCV) positive since 1998. My source of infection was one of my many cryoprecipitate infusions (cryo being the only available treatment for anyone with factor 1 deficiency until 2009, and for me until November 2014). What makes me different than most people with […]

CSL Behring Presents Phase 3 Data about Afstyla for Hemophilia A

July 27, 2016

Note: The below is an edited version of an article originally published on PR Newswire. The original release can be read in it’s entirety聽here. CSL Behring聽today presented data from a Phase III pivotal study of Afstyla聽[Antihemophilic Factor (Recombinant), Single Chain] in hemophilia A patients less than 12 years of age at the XXXII International Congress […]

Voluntary Withdrawals of Helixate FS & Kogenate FS

July 26, 2016

As part of HFA鈥檚 ongoing mission to assist and advocate for the bleeding disorders community, this medical news is being issued to keep you informed about product safety. About These Withdrawals CSL Behring is initiating a voluntarily recall of two lots of its hemophilia A drug Helixate FS containing active ingredient manufactured before November 2015. […]

Adynovate Phase 3 Efficacy and Safety Data in Children to be Presented

July 26, 2016

Note: The below is an edited version of an article originally published on PR Newswire. The original release can be read in it’s entirety here. _________________________________________________________________________________________ Shire will present additional data on the clinical experience of ADYNOVATE [Antihemophilic Factor (Recombinant), PEGylated], an extended half-life recombinant Factor VIII (rFVIII) replacement for hemophilia A, during the International […]

CSL Behring Presents Phase III Data for IDELVION for Hemophilia B

July 26, 2016

Note: The below is an edited version of an article originally published on Yahoo Finance. The original release can be read in it’s entirety here. _________________________________________________________________________________________ CSL Behring announced new data today from its Phase III PROLONG-9FP clinical development program evaluating聽IDELVION庐 [Coagulation Factor IX (Recombinant), Albumin Fusion Protein], the company’s long-acting recombinant albumin fusion protein […]

Alnylam Announces New Positive Interim Phase 1 Study Results for Fitusiran

July 26, 2016

Note: The below is an edited version of an article originally published on StreetInsider.com. The original release can be read in it’s entirety聽here. _________________________________________________________________________________________ Alnylam Pharmaceuticals, Inc. announced today new positive results from its ongoing Phase 1 study with Fitusiran, an investigational RNAi therapeutic targeting antithrombin for the treatment of hemophilia A and B and […]

Infusing Love: Defining Normal

July 26, 2016

鈥淗ow do you do it?鈥 鈥淚sn鈥檛 it difficult?鈥 鈥淒o you feel as though you need to wrap him in bubble wrap?鈥 鈥淗ow do you handle all of it?鈥 Most bleeding disorders moms have had to answer those questions or something similar to them. Questions of that nature do not surprise me anymore, because what parenting […]

Novo Nordisk Announces New Data on Psychosocial Impact of People Living with Hemophilia B

July 26, 2016

Note: The below is an edited version of a press release by Novo Nordisk. The original release can be read in it’s entirety聽here.聽 Novo Nordisk today announced the first results from the Bridging Hemophilia B Experiences, Results and Opportunities into Solutions (B-HERO-S) study, which found that many adults and children living with even mild or […]

Dear Addy: Joint Replacement Surgery

July 25, 2016

Dear Addy, I’m a 50-year-old with hemophilia A, who’s right elbow has seen better days. I’m in the process of researching all my surgical options before making an appointment with my HTC. At this point in my life I’m really intrigued with an elbow replacement. Do you know of any other results throughout the community? […]

Spark Therapeutics and Pfizer Announce Receipt of FDA Breakthrough Therapy Designation for SPK-9001 for the Treatment of Hemophilia B

July 21, 2016

Note: The below is an edited version of a press release by Spark Therapeutics.聽The original release can be read in it’s entirety聽here. Spark Therapeutics and Pfizer Inc. announced today that the聽U.S. Food and Drug Administration聽(FDA) has granted breakthrough therapy designation to聽SPK-9001,聽the lead investigational candidate in the companies’聽SPK-FIX聽program, in development for the treatment of hemophilia B.聽SPK-9001,聽a […]

HFA to Present CHOICE Project Data at World Federation of Hemophilia World Congress

July 21, 2016

HFA to Present CHOICE Project Data at World Federation of Hemophilia World Congress 聽The CHOICE Project was a first-of-its-kind data collection from people with hemophilia and other bleeding disorders. FOR IMMEDIATE RELEASE: July 21, 2016 Contact: Sonji Wilkes (202)-675-6984 or email at s.wilkes@hemophiliafed.org Hemophilia Federation of America (HFA) announced today that it will present new […]

Infusing Love: It鈥檚 About to Happen

July 19, 2016

When my son, Julian, began middle school, I kicked his hemophilia education into high gear.聽 He already knew the basics, but it was now time for him to learn how to call and order his factor, find the Hemophilia Treatment Center closest to him when on vacation, and to understand the importance of keeping the […]

HFA Continues Initiative with Centers for Disease Control and Prevention

July 19, 2016

The Hemophilia Federation of America (HFA), a national nonprofit headquartered in Washington, DC, has been awarded year three of a five-year cooperative agreement from the Centers for Disease Control and Prevention (CDC).聽 The award allows HFA to continue its mission of assisting and advocating for individuals and families in the bleeding disorders community by further […]

HFA Receives 4-Star Rating from Charity Navigator

July 14, 2016

Hemophilia Federation of America (HFA) recently earned a 4-star rating from Charity Navigator, the largest independent charity evaluator in the United States. Charity Navigator鈥檚 ratings system provides donors clear, objective, and reliable assessments of the financial health and accountability, and transparency of charities. Attaining a 4-star rating verifies that HFA exceeds industry standards and outperforms […]

Intern Introspective: A Day in the Life

July 14, 2016

The halfway point of our Policy and Government Relations Internship program is an excellent time to take stock of our interns鈥 first month or so. In this Intern Introspective, Cami and Eric break down what an average day in the life looks like as an HFA intern.聽 ___________________________________________________________________________________________ 9 am to 10 am – Cami […]

FDA Releases “Voice of the Patient” Summary from Patient-Focused Drug Development Initiative

July 14, 2016

In September 2014, the U.S. Food and Drug Administration hosted a public meeting as part of it’s Patient-Focused Drug Development initiative, a 5 year initiative to learn more from patients across a variety of disease and disorders. We were proud to be a part of this meeting and provided support to several of the patient […]


Sign up for E-mails, Dateline Magazine, and other ways to stay connected.