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News & Perspectives

Update #3: SIPPET Study Released

June 14, 2016

On May 26 2016, the New England Journal Of Medicine (NEJM) published the results of the Survey of Inhibitors in Plasma Products Exposed Toddler (SIPPET) study. Investigators found that in a randomized study, when previously-untreated patients (PUPs) were treated with recombinant factor VIII, there was an 87% higher incidence of inhibitor development than when treated with plasma-derived factor VIII. […]

Spark Therapeutics Announces Updated Data from Hemophilia B Trial

June 14, 2016

Note: The below is an edited version of a press release by Spark Therapeutics. The original release can be read in it’s entirety here. PHILADELPHIA, June 13, 2016 – Spark Therapeutics announced today updated results of the first cohort from the ongoing Phase 1/2 clinical trial of SPK-9001, the lead investigational candidate in its SPK-FIX program, which is being studied for the […]

Gene Editing Removes HIV From Human T-Cells

June 14, 2016

Note: Scientific Reports released an article outlining the results of a study by researchers at Temple University offers promising new advancements toward a cure for HIV.  Using specialized gene-editing,  researchers were able to effectively and safely eliminate HIV-1 from the DNA of human T-cells. This study is especially promising in that there appear to be very little to no side […]

Dear Addy: National Safety Month

June 13, 2016

Dear Addy, My son is about to start summer vacation. While he is excited, I’m concerned about all of the activities he will be doing. It seems everything he enjoys involves risking a bleed. How do I monitor my child’s safety while allowing him to have fun this summer? Signed, Anxious About Summer Break Dear […]

Infusing Love: Superheroes Need Rest Too

June 8, 2016

Ask for help! It seems easy to do, but it takes a lot of effort. If someone would have told me, as a hemo mom, “You need to ask for help!”I could have saved myself a few unnecessary headaches. I recall a time when my oldest son, Marques, was in the hospital with a bad […]

Intern Introspective: Introducing Eric

June 3, 2016

Earlier this year, we opened applications for a ten-week policy and government relations internship* for this summer. We are excited to introduce you to the two candidates that we selected! Eric and Camila are part of the bleeding disorders community and have been chosen because of their leadership qualities and interest in the field of […]

Shire Completes Combination with Baxalta

June 3, 2016

Today, June 3, 2016, Shire completed its previously announced acquisition with Baxalta Incorporated. The combined company is expected to deliver over $20 billion in annual revenues by 2020. The company is focused on serving patients with rare diseases and other highly specialized conditions. Read the press release from Shire in it’s entirety here.   About Shire  […]

The Ins and Outs of BMI

June 1, 2016

By Michelle Morath “Healthy Bodies Bleed Less” continues to be the mantra of HFA’s FitFactor program. It is our goal to get every community member at least considering the positive effects that physical activity and a healthy diet can have not only on their joint health, but also their overall health and sense of well-being. […]

Infusing Love: Nurturing My Soul

June 1, 2016

Do you ever wish there was someone who truly understood what you were going through?  Do you wish you could surround yourself with a support network of other women in your local area, but can’t find them? Do you wish you had more support from women in the bleeding disorders community? In 2013, a group […]

FDA Approves First Single Chain Product for Hemophilia A

May 27, 2016

Note: The below is an edited version of a press release by CSL Behring. The original release can be read in it’s entirety here. KING OF PRUSSIA, Pa., May 26, 2016 — CSL Behring announced today that the U.S. Food and Drug Administration (FDA) has approved AFSTYLA [Antihemophilic Factor (Recombinant), Single Chain], its novel long-lasting recombinant factor […]

Emicizumab Study Results Released in New England Journal of Medicine

May 26, 2016

Note: The New England Journal of Medicine released an article outlining the results of a study of a new drug, Emicizumab (ACE910, Chugai Pharmaceuticals), that shows reduced bleeding in patients with severe hemophilia A. Read the full article, Factor VIII–Mimetic Function of Humanized Bispecific Antibody in Hemophilia A, in the New England Journal of Medicine. This video […]

Infusing Love: Out of the Mouths of Babes

May 25, 2016

When Thomas was in preschool, my family and I attended our first HFA Symposium. One of the educational sessions featured a panel of speakers who shared how to best prepare yourself, your child, and your school for a child with hemophilia. I took copious notes during that session because we were only two years away […]

Conquering Mountains

May 24, 2016

  My beautiful wife Jackie, and I have three boys: Desmond, 8-years-old, Liam, 5-years-old and Patrick, 3-years-old. Patrick has severe hemophilia A, and inhibitors. We live in middle Georgia. Until three years ago we knew nothing about hemophilia. We had no family history and it was the furthest thing from our minds as parents. We have two strong, […]

Infusing Love: My Blood Gang

May 18, 2016

Not related by blood. Family because of it. I had a button made with this quote when Max participated in the Beards for Bleeders fund-raiser two years ago. Something I have gained from the bleeding disorder community is an oddly mismatched, but amazing group of BFFs. My gang, as I like to call them. What […]

Op-Ed: Serious ACA Wrinkle Jeopardizes Help for Chronic Patients

May 12, 2016

Note: The following is an op-ed written by Charlene Cowell, executive Director of HFA member organization Hemophilia of North Carolina. This article was originally published by the Raleigh News & Observer. To learn more about this issue affecting third party premium assistance, visit our Advocacy page. Despite a significant uptick in the number of insured […]

Infusing Love: Isolated No More

May 10, 2016

Until recently my husband and I didn’t realize how alone Chris felt growing up with hemophilia. He had support from family, friends, coaches, teammates, the treatment staff, and us. Yet he didn’t have anyone to talk with that really understood what it was like to have hemophilia. We tried our best to not treat Chris […]

3 Great Smoothies for National Beverage Day

May 6, 2016

May 6, 2016 is National Beverage Day. Why not celebrate with these three delicious smoothie recipes from HFA’s FitFactor partnership with the folks over at SuperKidsBook.com? Berry Beet Smoothie 1/2 c. Vanilla yogurt 1 Banana 1/2 c. Fresh or frozen Strawberries 1/4 c. Cooked beets Banana Orange Delight 1/4 c. Plain yogurt 1/2 c. Orange […]

Infusing Love: I Get To Decide

May 4, 2016

I have an incredibly sweet and endearing child. I have been told on more than one occasion by his teachers that he has a sense for other children’s feelings, he knows when children are hurting, and he makes an effort to console them. I would love to take full credit for Logan’s sweet personality, but […]

Colorado Dad Continues Advocacy Involvement

May 3, 2016

Nathan Wilkes has been advocating for his son, Thomas, who has hemophilia and an inhibitor for more than a decade. Nathan began his advocacy by simply writing an essay about his family’s struggle with lifetime caps which was sent to a limited number of contacts within state government and a few friends. He soon found […]

Biogen Announces Intent to Spin off Its Hemophilia Business

May 3, 2016

Note: The below is an edited version of a press release from Biogen Inc. The original release can be read in its entirety here. Biogen Inc. announced on Tuesday, May 3, 2016 that it intends to spin off its hemophilia business as an independent, publicly traded company. The strategic goal of this transaction is to […]

May is Hepatitis Awareness Month

May 1, 2016

In 2001, the Centers for Disease Control (CDC) and Prevention designated the month of May as Hepatitis Awareness Month to bring awareness and attention to those living with viral hepatitis. In the 1980s and 1990s, thousands of people with hemophilia contracted HIV and Hepatitis C (HCV) from the contaminated blood supply transmitted by clotting factorproducts. […]

Action Alert: Voluntary Withdrawal of IVIG Product

April 27, 2016

As part of HFA’s ongoing mission to assist and advocate for the bleeding disorders community, this action alert is being issued to keep you informed about blood safety. About This Withdrawal Due to increased reports of hypersensitivity reactions such as rashes or urticaria and/or wheezing, Octapharma USA Inc. has voluntarily withdrawn from the market one lot of […]

Infusing Love: No Promises

April 26, 2016

What is the last thing you say to your child before they leave the house? Maybe it is “I love you.” “Be careful” is always toward the top of my list. Ideally, I’d like to hear “Yes ma’am,” or “I will” in response. Do I ever hear that?! No! Nick’s favorite response is “No promises.” […]

CDC Releases New Recommendations for Opioid Prescriptions for Chronic Pain

April 26, 2016

Note: The following is an edited form of a press release from the Centers for Disease Control and Prevention (CDC). The original form of the release can be read here. To read more about pain issues in the hemophilia community, please visit these resources from HFA: Opioids, Addiction, & Bleeding Disorders Pain Toolkit Webinar: Ouch! […]

Hemophilia: Not an Excuse to Be a Couch Potato

April 25, 2016

By Michael Zolotnitsky, PT, DPT Growing up with hemophilia made waking up with bruises, joint pain, or the inability to bear weight on my ankles a normal occurrence. Time and time again, my mother had to drive me to the local hematology clinic to have factor infused. I did not feel like a normal child. I […]

Helping Hands: Housing Expenses

April 20, 2016

In 2015, HFA’s Helping Hands program assisted 295 households and distributed over $124,00 in direct aid to families in the bleeding disorders community! Of those 295 households helped in 2015 we assisted 90 families/individuals with their housing expenses. Read how one family has benefited from this vital program: I cannot thank Helping Hands enough for what they did for my family. […]

Letter to FDA Commissioner Regarding Biosimiliar Safety & Approval Process

April 20, 2016

HFA is proud to be part of the Patients for Biologics Safety & Access (PBSA). PBSA is a coalition of 24 patient advocacy organizations dedicated to protecting patient access to safe and effective biologics. Together, this coalition represents millions of Americans who suffer from serious, life-threatening diseases that are difficult to diagnose and treat. As […]

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 […]


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