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News & Perspectives

Infusing Love: Aprendiendo a vivir con un nuevo diagnóstic

September 21, 2016

von Willebrand Disease… ¿Qué es eso? ¿Qué clase de enfermedad tienen mis hijas? ¿Es contagioso? ¿Qué le puede pasar? Esta y muchísimas preguntas más fueron las que nos hicimos el día en que la pediatra en Albany, Nueva York, diagnosticó nuestra hija menor, Juliemar, 8 años a este momento, con von Willebrand Disease (vWd), tipo […]

Dear Addy: Advocacy Presentation

September 19, 2016

Dear Addy, I have to do a presentation in front of my eighth grade class on a cause I care about. I’d like to focus on bleeding disorders because I have von Willebrand Disease (vWD), but there’s so much information and I don’t know where to start. Help! Signed, Anxious for an A   Dear […]

Infusing Love: No (Wo)Man’s Land

September 14, 2016

My 10-year-old daughter, Natalie, has been officially DNA tested and is a carrier of the hemophilia gene. This wasn’t particularly surprising or upsetting to my husband or myself, or even Natalie. For a child, she has a remarkably good grasp on the genetics of hemophilia and she understands what it means to be a carrier. […]

PPTA Releases Updated Statement on Zika

September 13, 2016

The following is a summary of a statement released by the Plasma Protein Therapeutics Association (PPTA). To read the PPTA statement in full, click HERE. On September 8, 2016, PPTA issued an updated news release regarding the Zika virus (ZIKV) and plasma protein therapies. In the release, PPTA notes that: ZIKV is in a family of (lipid-enveloped) viruses that is […]

Sangamo BioSciences Receives Orphan Drug Designation From The FDA For SB-FIX

September 9, 2016

The following is excerpted from a press release from PRNewswire. Read the press release in it’s entirety here. Sangamo BioSciences, Inc. announced earlier this week that the U.S. Food and Drug Administration (FDA) has granted orphan drug designation to SB-FIX, the company’s zinc finger nuclease (ZFN)-mediated genome editing product candidate for the treatment of hemophilia B. Sangamo […]

Infusing Love: A Mom Intervention

September 7, 2016

Benny starts high school this week. How did that happen? When I started working at HFA he was in kindergarten. I remember being amazed at his astounding ability to put 100 piece puzzles together at 5 years old and spend hours building things with Legos. At the start of second grade, despite untold hours trying, […]

Dear Addy: Mental Health

September 5, 2016

Dear Addy, I’m concerned about how my bleeding disorder is effecting my mental health. However, it’s not clear that my insurance covers a therapist or counselor so I keep putting off seeking counseling or therapy. How important is mental health and where do I find the correct insurance information? Sincerely, Taking Control _________________________________________________________________________ Dear Control, […]

FitFactor: Six Steps to Sleeping Well

September 5, 2016

When it comes to health and lifestyles, many of us do not put sleep at the top of our priority list. We may not realize the numerous benefits that sleep has on our bodies and minds. Not only does it give us the rest we need to replace the energy expended from the day but […]

Infusing Love: Thank You to Our Teachers

August 31, 2016

Through out the school year I have such a hard time balancing being the mom that every teacher or administrator loves to communicate with verses being the mom that everyone wants to run away from. I decided to sit down and write exactly what I wish I could say to every teacher or administrator Scarlett […]

Update #3: Zika Virus & Blood Supply

August 27, 2016

On August 26th, the US Food and Drug Administration issued a revised guidance to US blood banks addressing Recommendations for Reducing the Risk of Zika Virus Transmission by Blood and Blood Components. The Zika virus is transmitted primarily by the Aedes mosquito; it can also be spread by sexual contact. Although 4 out of 5 […]

Dear Addy: Back to School Secondary Education

August 22, 2016

  Dear Addy, My son is starting kindergarten this fall and I’m concerned about what will happen if he has a bleed at school. What are his rights at school and how do I ensure he has the same opportunities as other students? Sincerely, Proactive Parent ______________________________________________________________________________________________________________________________________________________________________________________________________________ Dear Proactive, With the new school year approaching, […]

Baxalta Sponsors 63 Students in 2016-17

August 22, 2016

Baxalta, now part of Shire, has awarded scholarships to 63 students from 13 states, further adding to the list of recipients of its Education Advantage scholarship program. For the seventh consecutive year, Baxalta US Inc. is helping eligible students with a bleeding disorder offset the costs of higher education, advance their careers, and pursue their […]

Infusing Love: A Picture is Worth a Thousand Words

August 17, 2016

I was cleaning out my closet recently and found an old picture of Nick stuffed in the pocket of a purse. My first thought was, “Man, he was a cute baby.” My second thought was, “That was right before he had a spontaneous epidural bleed.” Nick was eleven months old, in daycare, and not walking […]

Intern Introspective: That’s a Wrap for Cami

August 12, 2016

Intern Introspective 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 […]

Voluntary Recalls Issued for Additional Lots of Kogenate FS Recombinant Clotting Factor Product

August 11, 2016

Bayer has announced a voluntary recall of additional lots of Kogenate FS with vial adapter. This is an update to the recall that was issued on July 25, 2016. All lot numbers affected by the July 25, 2016 recall and August 10, 2016 extension are: Product Lot Number Expiration Date Kogenate FS 250 IU Vial Adapter 270RV8X 12/19/2017 […]

Voluntary Recalls Issued for Additional Lots of Helixate FS Recombinant Clotting Factor Product

August 11, 2016

CSL Behring has announced a voluntary recall of additional lots of Helixate FS with vial adapter. This is an update to the recall that was issued on July 25, 2016. All lot numbers affected by the July 25, 2016 recall and August 10, 2016 extension are: Product Lot Number Expiration Date Helixate FS 250 IU 270P892 09/15/2016 […]

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 Pokémon

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’t 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 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 CEO Flemming Ornskov said that the Dublin and Lexington, MA, company has discontinued development of BAX 335, an experimental gene therapy for hemophilia B. Prior to the merger of Baxalta and Shire, Baxalta had indicated plans […]

Infusing Love: Careful What You Say

August 3, 2016

I had a “Hemo Mom” moment of synchronicity earlier this summer. In my last Infusing Love post, “Superheroes Need Rest Too,” 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  -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.  The original article can be read in their entirety 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.  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 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 entirety 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 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.  The updated data show that […]


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