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News & Perspectives

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鈥檚 feelings, he knows when children are hurting, and he makes an effort to console them. I would love to take full credit for Logan鈥檚 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鈥檚 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聽USA聽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 has voluntarily withdrawn from the market one lot of […]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 鈥淚 love you.鈥 鈥淏e careful鈥 is always toward the top of my list. Ideally, I鈥檇 like to hear 鈥淵es ma鈥檃m,鈥 or 鈥淚 will鈥 in response. Do I ever hear that?! No! Nick鈥檚 favorite response is 鈥淣o promises.鈥 […]

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聽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聽295 households聽and distributed over聽$124,00 in direct aid to families in the bleeding disorders community!聽Of those 295 households helped in 2015 we assisted 90聽families/individuals聽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鈥檚 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鈥檚 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.聽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.聽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聽Dateline Federation.聽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聽Ko膩te庐 Double Viral Inactivation (DVI) Antihemophilic Factor (human)聽with Mix2Vial鈩, 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.聽Following the MyPlate guidelines a healthy diet should include plenty […]

Infusing Love: Family Ties

March 23, 2016

I鈥檓 adopted. My birth mother was a spontaneous carrier and when she put me up for adoption she didn鈥檛 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鈥檇 like to explain to the other boy鈥檚 parents about Joshua鈥檚 hemophilia, but I don鈥檛 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.聽 The U.S. Food and Drug Administration (FDA) has approved Bayer鈥檚 KOVALTRY庐 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?聽 I don鈥檛 and I only gets labs drawn yearly and have my flu shot once a year.聽 When you have hemophilia and you have serious needle phobia, infusions don鈥檛 go well.聽 My son Chris, who is now 30, admits he still has severe needle phobia. Chris鈥檚 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鈥檛 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聽here.聽 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鈥檛 fancy, SAT prep course worthy words. They are simple words, in a simple sentence, but there鈥檚 no simple answer to the question. 鈥淗ow鈥檚 Thomas doing?鈥 It鈥檚 double-edged sword. It鈥檚 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聽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 Jan. 1.聽 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 聽a simple and聽familiar visual, that would be easy to remember and use, a place setting.聽 MyPlate is a reminder to find your healthy eating style and build it throughout your lifetime. Everything you eat and drink matters. The […]


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