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News & Perspectives

Infusing Love: To Go or Not To Go

April 20, 2016

Daffodils blooming, grass growing, longer days, and camp applications arriving in the mail mark the arrival of spring. We have a top-notch medical camp facility just forty-five minutes from our home. Our local Children’s Hospital hematology/oncology department sends staff to run the camp and take care of the kids. Camp is a week of acceptance. […]

Infusing Love: Never Too Young To Advocate

April 13, 2016

For the past four years I have been participating in Hemophilia of South Carolina’s legislative days. During this annual event, I meet with our local representatives to share my experience of raising a child with a bleeding disorder and why it is important to support state programs that support our community. In prior years, I […]

Factor I Deficiency: A Voice for a Rare Community

April 8, 2016

My name is Rick Kelly, and my wife, Josie, I are the proud parents of Forrest. Forrest has a rare bleeding disorder called afibrinogenemia, or Factor I deficiency. This is the story of afibrinogenemia in three anecdotes that explain what afibrinogenemia is, the current state of treatment and its outlook for the future. In sharing […]

Remembering Ryan White 26 Years Later

April 7, 2016

Ryan White died at the age of 18 on April 8, 1990. During the 1980s, Ryan bravely became a national spokesperson and symbol of hope for the hemophilia and HIV/AIDS community after being expelled from middle school due to community fears that the virus would spread to other children. Learn more about Ryan’s legacy by clicking […]

Infusing Love: We Keep on Ticking

April 6, 2016

My first national bleeding disorder conference was in New Orleans in 1998. I was overwhelmed at the over 2,000 individuals in attendance. My son was two and the enormity of hemophilia hit me hard when I saw men in wheelchairs, using walkers, and not moving their limbs with ease. What in the world was really in […]

Recognizing Bleeding Disorders Awareness Month

April 1, 2016

Note: The following appears in our Spring 2016 edition of Dateline Federation. Please see the full issue for all the amazing community support shown for Bleeding Disorders Awareness Month! For the past 30 years, the bleeding disorders community has unofficially recognized Hemophilia Awareness Month during the month of March. The name originated from a proclamation made by […]

FDA Approves Needle-Free Transfer Device for Hemophilia A Product

March 31, 2016

Note: The following in an edited press release from Kedrion Biopharma. The original release can be read in its entirety here. Kedrion Biopharma has gained approval from the U.S. Food and Drug Administration to package Koāte® Double Viral Inactivation (DVI) Antihemophilic Factor (human) with Mix2Vial™, a needle-free transfer device. The new packaging is designed to offer hemophilia […]

Recipe: So Easy Slow Roasted Salmon

March 29, 2016

Being at a healthy weight is an important step for people with a bleeding disorder to take in order to maintain healthy joints. Eating a diet that includes a variety of clean, natural foods is a great way to get to or maintain a healthy weight. Following the MyPlate guidelines a healthy diet should include plenty […]

Infusing Love: Family Ties

March 23, 2016

I’m adopted. My birth mother was a spontaneous carrier and when she put me up for adoption she didn’t know about hemophilia. When I met her about ten years ago I found out that I have five younger siblings. Two of my brothers, Edwin and Steven, had hemophilia and died from HIV contracted in the […]

Dear Addy: Sleepover

March 17, 2016

Dear Addy, We recently moved and Joshua, my 8 year old son with severe hemophilia, has made a new friend who has invited him over to a sleepover. I’d like to explain to the other boy’s parents about Joshua’s hemophilia, but I don’t want to freak them out either. How should I start that conversation? […]

FDA Approves New Recombinant Factor Following LEOPOLD Trials

March 17, 2016

Note: The following is an edited version of a press release from Bayer. The original press release can be found here.  The U.S. Food and Drug Administration (FDA) has approved Bayer’s KOVALTRY® Antihemophilic Factor (Recombinant), an unmodified, full-length factor VIII compound for the treatment of hemophilia A in children and adults. The approval is based […]

Infusing Love: Overcoming Obstacles

March 16, 2016

Does anyone really like getting stuck with needles?  I don’t and I only gets labs drawn yearly and have my flu shot once a year.  When you have hemophilia and you have serious needle phobia, infusions don’t go well.  My son Chris, who is now 30, admits he still has severe needle phobia. Chris’s first […]

Qualitative Platelet Disorder: We Just Don’t Quite Fit In

March 15, 2016

Patrick is a typical 12 year old who happens to have a rare bleeding disorder called, qualitative platelet disorder; the diagnosis is descriptive rather than specific – we have been told it is a one in a million condition and they do not know why his platelets do not function properly. We also don’t know […]

Trial for SubQ Hemophilia Inhibitor Treatment Begins

March 14, 2016

Note: The below is an edited press release from Alnylam Pharmaceuticals, Inc. The original release can be read in its entirety here.  Alnylam Pharmaceuticals, Inc. announced on Monday, March 14, 2016, that it has initiated dosing of hemophilia patients with inhibitors in Part D of an ongoing Phase 1 clinical trial evaluating a once-monthly subcutaneous dose […]

Infusing Love: A Double Edged Sword

March 9, 2016

There are three words that I have a love-hate relationship with. The words are spoken with good intention and they aren’t fancy, SAT prep course worthy words. They are simple words, in a simple sentence, but there’s no simple answer to the question. “How’s Thomas doing?” It’s double-edged sword. It’s almost impossible for me to […]

FDA Approves First 14-Day Hemophilia B Treatment

March 5, 2016

Note: The following is an edited form of a press release from the FDA . The original form of the release can be read here. The U.S. Food and Drug Administration approved on Friday, March 4, Idelvion, Coagulation Factor IX (Recombinant), Albumin Fusion Protein, for use in children and adults with Hemophilia B. Idelvion is the […]

Infusing Love: Too Long to Wait

March 3, 2016

Our insurance provider changed at the beginning of this year.* We knew there would likely be some new hoops and apprehensively were preparing in the months prior to January 1st.  Thinking I was a savvy bleeding disorders mom getting ahead of a game, I knew this may require some extra work. So first thing on […]

FDA Gives Orphan Drug Designation for Hemophilia A Gene Therapy

March 1, 2016

Note: The below is an edited version of a press release by BioMarin Pharmaceutical Inc. The original release can be read in its entirety here. BioMarin Pharmaceutical Inc. announced on Tuesday, March 1, that BMN 270, an investigational gene therapy for the treatment of patients with hemophilia A, has been granted orphan drug designation by […]

FitFactor: Eat Healthier with MyPlate

February 26, 2016

In an effort to make healthier food choices easier to understand, the U.S. Department of Agriculture created  a simple and familiar visual, that would be easy to remember and use, a place setting.  MyPlate is a reminder to find your healthy eating style and build it throughout your lifetime. Everything you eat and drink matters. The […]

Infusing Love: The Costs of Bleeding Disorders

February 24, 2016

We’ve all read those statistics that discuss the cost of raising a child. Most I’ve seen report the costs in the $250,000 range. Kids are expensive. Just recently, at Target, our cart contained a variety of things that were not on my list and, of course, I had to actively tell my 4-year-old that he […]

HFA Observes February 29 As Rare Disease Day

February 23, 2016

The Hemophilia Federation of America (HFA) joins the National Organization for Rare Disorders (NORD) on February 29, and others around the world in observing Rare Disease Day. The purpose of this day is to focus attention on the needs of patients and families affected by rare diseases. In the U.S., any disease affecting fewer than […]

Infusing Love: Unplugged

February 17, 2016

For those of us with children who have their own cell phones, how many times a day do you say, “Get off the phone!” or “Put the phone down!”? But I challenge you to think about yourself: How many things are you doing right now? Other than reading this blog – one, two, three more […]

Community Voices: An Inhibitor On The High Seas

February 16, 2016

Justin Levesque (pictured in the orange hat), poses with the crew aboard a ship bound for Iceland.  __________________________________________ Justin Levesque has severe hemophilia with an inhibitor. Justin recently had an opportunity of a lifetime when he spent nine days aboard a ship to Iceland as part of an art project that he developed. In this […]

Infusing Love: Second Guessing

February 10, 2016

I deal with mommy guilt every time Jackson has a bleed. When my son is having a bleed, he tells me before there is any visible signs off swelling. I never doubt when he tells me…he knows his body. Two weeks ago, we got a dreaded call from the school health aide letting us know […]

Dear Addy: Pharmacy Choice

February 5, 2016

Dear Addy, Last year, my friend with hemophilia started working for a specialty pharmacy. Since then, he’s been pressuring me to switch from my current pharmacy to his. Initially, he was polite and nice, taking me to lunch and then dinner to ask for my business. Each time, I told him I am content with […]

Zika Virus and the Blood Supply

February 4, 2016

We’ve recently received questions from the bleeding disorders community about the Zika Virus and the possibility of transmission via the blood supply. Zika is primarily transmitted through the bite of infected Aedes mosquitoes, the same mosquitoes that spread Chikungunya and dengue. HFA has been in contact with the Centers of Diseases and Control (CDC) and […]

Infusing Love: For the Love of Basketball

February 3, 2016

It is important for individuals with a bleeding disorder to find a form of physical activity that they enjoy. When muscles are used during exercise it helps to keep them flexible and strong.  Physical activity also helps individuals to maintain a healthy weight, which keeps less stress off the joints, and has even proven to […]

New Gene Therapy Treatment Proves Effective In Dogs

February 2, 2016

Note: The following is an edited form of a press release from the University of North Carolina School of Medicine. The original release can be read here. A single injection. That’s all someone with a factor VII deficiency would need for a life-long cure, thanks to a new gene therapy treatment developed in a collaboration of […]

FDA Approves Treatment of Chronic Hepatitis C Genotypes 1 and 4

February 1, 2016

Note: The following is an edited form of a press release from the Food and Drug Administration. The original form of the release can be read here. On Thursday, January 28, the U.S. Food and Drug Administration approved Zepatier (elbasvir and grazoprevir) with or without ribavirin for the treatment of chronic hepatitis C virus (HCV) […]

FDA’s Completed Revision of MSM Donor Deferral Policy

January 28, 2016

Background The Food & Drug Administration (FDA) is responsible for recommending policies and making rules regarding the donation of blood and blood products. During the 1980s, when it became clear that transmission of Acquired Immune Deficiency Syndrome (AIDS) happened through blood, the FDA began recommending multiple policies that would decrease the risk of transmission of […]


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