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News & Perspectives

Alnylam Presents Phase I Clinical Drug Trial Data at ASH 2016

December 12, 2016

  Note: The following is an excerpt from a press release from Alnylam Pharmaceuticals, Inc. regarding news from their recent presentation at the American Society of Hematology (ASH) Annual Meeting. The original article can be read in its entirety here. ______________________________________________________________________________ Alnylam Pharmaceuticals, Inc. presented data from the phase 1 study of fitusiran at the […]

Dear Addy: Giving Back

December 12, 2016

Dear Addy, I want to give back this holiday season, but I’m not sure how. Can you recommend ways to be more involved in my community? Signed, Inspired to Serve _____________________________________________________________________________________________________________________________________________________________ Dear Inspired, The holiday season is a good time to reflect on giving to a cause or serving those in need. There are many […]

Infusing Love: Taking a Stand

December 7, 2016

  Every day we advocate for our children and ourselves. Our advocacy ranges on a small scale such as requesting a drink refill when we need one at restaurant to advocating for our children on a larger scale when requesting a doctor to infuse your child before any sort of x-ray when in an emergency […]

FitFactor: How Does Your List of Healthy Foods Compare with a Nutritionist’s?

December 5, 2016

Do you feel that your views of what’s healthy align with the views of the experts? The New York Times published an interesting article a few months ago about public perception of what is “healthy” and how these have changed over time. The study also highlighted what foods nutritionists believe to be the healthiest (and […]

Infusing Love: A Boy & His Dog

November 30, 2016

Thomas had a stuffed animal when he was little. “Dog*” went through a lot with us. He was a constant companion, friend and source of comfort. Dog stayed in the hospital, went to clinic visits and traveled with us. We would literally pack factor for an ER visit with one hand and grab Dog with […]

Dear Addy: Formularies

November 28, 2016

Dear Addy, I keep hearing the terms formulary and preferred drug list. What do they mean and should I be worried if my current insurance plan has one? What about my friends that have Medicaid? Signed, Informed Consumer ____________________________________________________________________________________ Dear Consumer, A formulary is a list of prescriptions drugs that are covered by a particular […]

Infusing Love: He Needed Me

November 23, 2016

I am exhausted. So very exhausted. I am pleading to myself that there isn’t something wrong; that the whimpers and small cries I hear as he sleeps aren’t there and that it is from sleep deprivation. I am drifting in and out of sleep on the baby glider that still graces his room even though […]

Caregiver Heroes: William

November 17, 2016

In honor of National Caregiver Month, we’ll be featuring “Caregiver Heroes” throughout the month of November. While all in the bleeding disorders community are heroes in their own special ways, these folks are being given a special shout-out for the ways they take care of their loved ones and themselves. Meet William from Tennesse. William […]

Octapharma Announces Two Hemophilia A Clinical Trials Utilizing Wilate

November 16, 2016

The following is excerpted from a press release from Octapharma USA. Read the press release in it’s entirety here.  Octapharma USA has announced that WILATE®, von Willebrand Factor/Coagulation Factor VIII Complex (Human) Lyophilized Powder for Solution for Intravenous Injection will be utilized for two important clinical trials for hemophilia A launching in December. Octapharma USA […]

Infusing Love: Remembering John Reed

November 16, 2016

With the recent passing of John Reed, the hemophilia community lost a true champion. John was so many things to so many different people – husband, father, blood brother, friend. The list goes on and on, as does the list of adjectives one could use to describe John – caring, passionate, compassionate, smart, dedicated. I […]

Dear Addy: Open Enrollment for New Users

November 14, 2016

Dear Addy, I’m applying for health insurance for the first time this open enrollment period. With a bleeding disorder, what should I look for in an insurance plan? Signed, First-time Subscriber _____________________________________________________________________________________ Dear Subscriber, First, an Open Enrollment Period is the time during the year when health insurance companies or HMOs (health maintenance organizations) are required by law to […]

We Are Always Here For You

November 9, 2016

Dear Advocate: After yesterday’s election, there are many questions for the bleeding disorders community. While we don’t have all of the answers, we understand the concerns many have. No matter what your politics are, know that HFA is there for YOU — the bleeding disorders community. We offer you our reassurance that we will continue to […]

Infusing Love: Finding His Voice

November 9, 2016

    Recently a friend shared a quote that really resonated with me: “A negative mind will never give you a positive life.” I recited that quote at least one hundred times the day she shared it. I even had to find a pretty Google image of the quote, print it off, and hang it […]

Caregiver Heroes: Kelly

November 3, 2016

In honor of National Caregiver Month, we’ll be featuring “Caregiver Heroes” throughout the month of November. While all in the bleeding disorders community are heroes in their own special ways, these folks are being given a special shout-out for the ways they take care of their loved ones and themselves. Meet Kelly from Nevada, who […]

Infusing Love: Goodbye, My Friend

November 3, 2016

Dear Port: Over the past five years you were a big part of how well I did infusing my son, Laithan. As much as he would fight me during infusions by moving around, I knew that I could always count on you to work. Don’t blame yourself for having to be removed! In five years […]

FitFactor: The Benefits of Hitting the Weight Room

October 31, 2016

Weight training plays an important role in keeping your body fit and healthy. It’s a great way for people with bleeding disorders to strengthen muscles and joints and by doing so, reduce the frequency and severity of bleeds. We spoke with Michael Zolotnitsky, Doctor of Physical Therapy, about the benefits of weight training and his […]

Dear Addy: Joint Health

October 31, 2016

  Dear Addy, I’m 27 years old with severe hemophilia B. I’m caring for myself and my joints, including infusing to prevent bleeds as much as possible. As you know, with time, joints just can’t move as freely. Is there anything I can do? Do you recommend any exercises that can improve movement? Signed, Achy […]

Infusing Love: Sisterly Bond

October 26, 2016

I adore the “On This Day” feature on Facebook. It is a wonderful way to look back at the past to see what has happened on any given day in past years. It often reminds me of those moments that may have slipped my mind in a blur of parenting madness over the last fifteen […]

Dateline: Ask the CDC – What’s von Willebrand Disease?

October 19, 2016

Erik von Willebrand, a Finnish physician, noticed several young girls in one family shared symptoms of a bleeding disorder. The year was 1924, and von Willebrand recognized that the girls’ symptoms were different from those of someone with hemophilia, a disease mostly affecting males. He called this new disease pseudohemophilia, or false hemophilia, but others […]

Infusing Love: Stealing My Joy? Never!

October 19, 2016

  For over a year my family has lived like most everyone else in the world.  We get up, go to work and school, have fun, go on trips, eat and play….it’s all very good.  Our oldest son has gone away to college and our youngest is in the fifth grade. The blessing has been […]

Prescription Benefit Program Changes for Recombinant Clotting Factor Product

October 18, 2016

  It has come to our attention that Helixate FS, a recombinant clotting factor product sold and distributed by CSL Behring, is being removed from prescription benefit programs for a limited number of patients using CVS/Caremark effective January 1, 2017. Patients currently using Helixate FS who have the “Advanced Control Formulary” plan with CVS/Caremark will have the […]

Dear Addy: Project CALLS

October 17, 2016

Dear Addy, My insurance company is making it increasingly difficult to access the services and products I need to care for my bleeding disorder, which has led to delayed care. How can I report these issues? Signed, Frustrated __________________________________________________________________________________________________________________ Dear Frustrated, You are not alone in your concerns. In August 2015, HFA launched Project CALLS […]

¡Juntos somos más resistentes! — Together we are Resilient

October 13, 2016

By: Kyle McKendall, Staff Member Photography by Kevin Daniels Taken from the Summer 2016 issue of Dateline: Full PDF available here   For the first time ever, HFA offered a comprehensive Spanish-language program at its annual Symposium, held in Las Vegas from March 30-April 2, 2016. More than 50 attendees participated in the program and attended […]

Infusing Love: Normal Is as Normal Does

October 12, 2016

As I have become more involved in the hemophilia community over the last few years, and read more stories online, it is evident that each person with hemophilia and the people caring for them have such different experiences with bleeds and treatments. When Chris was young, we were told Chris wasn’t your “typical” child with […]

FDA Issues Warning New Hepatitis C Drugs Could Reactivate Hepatitis B Virus

October 9, 2016

The following is excerpted from an FDA news release. To read the release in its entirety, click here. The U.S. Food and Drug Administration is warning about the risk that some of the new direct-acting antiviral medicines for hepatitis C (HCV) can reactivate the hepatitis B virus (HBV) among patients who have had HBV. “In a […]

Blood Journal: Analysis of 13 Years of Hemophilia Patient Data

October 9, 2016

A recent article in Blood, a publication of the American Society of Hematology, examines thirteen years of surveillance data collected by the Centers for Disease Control and Prevention regarding patient outcomes for men with severe hemophilia. Among the key points: Prospectively collected data on demographics, complications, and mortality are described for 4899 US men with […]

Infusing Love: Respecting Our Elders

October 5, 2016

I have been thinking a lot about my role in my bleeding disorder community as Max becomes an adult. Where is my place as a mom of an adult son with hemophilia? I have been given the gift of having a job that keeps me connected and involved, but what about the other old timers? […]

FitFactor: Get Your Gears Going!

October 3, 2016

In late September, a group of community members, HFA staff, and sponsors rode, by bike, 156 miles from West Virginia to Washington, D.C. following the old mule tracks next to the C & O Canal. We started out on a Friday in West Virginia and finished at the canal’s beginning in Georgetown on Sunday, spending […]

Dear Addy: Carrier Testing

October 3, 2016

Dear Addy, Given our family history, my 8-year-old daughter could be a carrier of hemophilia. When should she get tested? Signed, Curious Carrier ____________________________________________________________________________________ Dear Curious Carrier, When to get tested is a personal decision, and you have a lot to consider. Importantly, consider that determining if your daughter is a carrier now could enhance […]

Infusing Love: Growing Our Family

September 28, 2016

Time moves so quickly. As adults we blink and a year has passed. As kids, we couldn’t wait to be adults. I feel like it was just yesterday that we were adjusting to life with one itty-bitty baby, with a chronic condition. Now we are in a routine, his disorder is well managed, and he […]


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