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Update #1: Study Suggests Higher Inhibitor Incidence in PUPS Using Kogenate/Helixate

October 6, 2014

On September 24, 2014, the medical journal, Blood, came out with a study called, Recombinant Factor VIII Products and Inhibitor Development in Previously Untreated Boys with Severe Hemophilia A.聽 This study suggests聽that inhibitor incidence is higher in previously untreated patients (PUPs) with severe Hemophilia A that are using Kogenate/Helixate (Bayer/Nexgen). Click here to read the […]

Infusing Love: It’s a Family Affair

October 1, 2014

I grew up knowing the word hemophilia, although as a child, I could not have told you what it exactly meant. I knew that some of the boys in my family bled a lot, but nothing about the different severities or types.聽 I knew that my Granddaddy was a bleeder and that he died when […]

Community in Action: Beards for Bleeders

September 30, 2014

John Bruno is truly a Dad in Action. HFA recently asked John a few questions about his involvement in the community. John sets a great example for all of those affected by a bleeding disorder. “I’m just looking for a way to do my part in supporting this great community.” Join John in his efforts […]

An Inhibitor Mom Shares Her Story With the FDA

September 25, 2014

On Monday, September 22, several members of the bleeding disorders community came out to share their experiences with bleeding disorders treatment with the FDA. HFA worked with partners like NORD, PPTA, and NHF to ensure that our community was effectively represented.聽Patients and advocates of every age, every background, and with several different conditions came out […]

Helping Hands: Housing Expenses

September 19, 2014

鈥淭hank you so much for all your assistance. I appreciate all your organization does for the hemophilia community. -Helping Hands recipient, 2012 “In late July, a single mom with two young children was referred to Helping Hands to assist in paying her rent after a recent hospitalization of her son with moderate hemophilia A. At […]

RIXUBIS Approved for Treatment of Children with Hemophilia B

September 16, 2014

Baxter International Inc. announced on Monday, September 15 that the United States Food and Drug Administration (FDA) has approved RIXUBIS [Coagulation Factor IX (Recombinant)] for routine prophylactic treatment, control and prevention of bleeding episodes, and perioperative management in children with hemophilia B. RIXUBIS was the first recombinant factor IX (rFIX) approved for routine prophylaxis and […]

Important Information About Respiratory Illness EV-D68

September 12, 2014

Cooler weather and back to school triggers the start of virus season.聽 More time spent indoors in close proximity to those that we work, play, learn, and live with聽provides a great opportunity for viruses to work their way from one person to the next.聽 While we all try to stay healthy, it is especially important […]

Baxter Announces Name Change to Baxalta

September 11, 2014

Baxter International Inc. announced on Wednesday, September 10, 2014 that Baxalta Incorporated will be the name of the new, publicly traded biopharmaceutical company that is expected to launch in mid-2015. Upon completion of the separation, Baxalta plans to trade on the New York Stock Exchange (NYSE) under the symbol BXLT. Baxter International will continue trading […]

A Critical Safety Net from the Past to the Present

September 8, 2014

Helping Hands is a unique financial assistance program that assists individuals and聽families within the bleeding disorders community with basic living聽聽expenses. It聽was designed to be a rapid, non-invasive, temporary resource for emergency situations聽and provide a foundation for future financial stability. In 1997, HFA started the Helping Hands program when it noticed there was an unmet聽need within […]

Infusing Love: Grandparents Know Best

September 7, 2014

Today is a day for celebrating grandparents, our experienced mentors in this journey of parenting.聽 Our Infusing Love mom bloggers share what their parents or grandparents have meant to them and how they’ve offered support when times get tough living with a bleeding disorder.聽 ________________________ Growing up, celebrating Grandparents Day was just as big as […]

Researchers Prevent Inhibitors in Mice with Hemophilia

September 5, 2014

New and exciting news recently published in the journal Blood about a possible method to prevent and treat inhibitors. A聽University of Pennsylvania聽researcher has successfully prevented inhibitors from forming in mice with聽hemophilia聽by using a plant-based drug to teach the immune system to tolerate clotting factors. Read this University of Pennsylvania 聽press release in its entirety. ____________________________ […]

Journal of Blood Medicine: Inhibitor Challenges

August 26, 2014

Inhibitors are antibodies that the immune system develops because it sees the infused clotting factor as a foreign substance that needs to be destroyed. Antibodies are proteins that eat up the activated factor before it has time to stop the bleeding. Approximately 30% of people with severe Hemophilia A are affected by inhibitors at some […]

Baxter Reports Success in Long-Acting Hemophilia Product

August 23, 2014

This article was originally published in Reuters on August 21, 2014. Click here to read it in its entirety. ______________________ Baxter International Inc said a more potent version of its flagship blood disorder drug Advate met the main goal in a late-stage study. The experimental drug, BAX 855, was being tested as a preventive therapy […]

Hemophilia is Only a Handicap if You Let it Be

August 21, 2014

Below is an excerpt from our one-of-a-kind Dads’ book, Dads in Action: Real Stories from the Bleeding Disorders Community. This book is free to all dads who sign up for our Dads in Action program. ___________________________________________________ I am 38 years old. I live with severe Hemophilia A, but I don’t suffer from it. I have […]

Dear Addy: Back To School

August 18, 2014

Dear Addy, We moved to a new state for my job. What is the best way to explain my son鈥檚 hemophilia to the school? I am worried about how to handle teaching the school about his hemophilia. I want them to know how they can support and help him to prevent bleeds and I want […]

EU Gives Hemophilia Sub-Q Injection Orphan Drug Designations

August 7, 2014

Alnylam Pharmaceuticals, Inc. (ALNY), a leading RNAi therapeutics company, announced today that the European Medicines Agency (EMA) Committee for Orphan Medicinal Products (COMP) has granted Orphan Drug Designations for ALN-AT3 as an orphan medicinal product for the treatment of hemophilia A and hemophilia B. Alnylam is developing ALN-AT3, a subcutaneously administered RNAi therapeutic targeting antithrombin […]

Dear Addy: Self-Insured Plans

August 4, 2014

Dear Addy, I heard something about individual health insurance plans. What can these plans do? Are there lifetime caps? Are out-of-pocket maximums higher or lower? I am just wondering if I should add this kind of plan to my list as a potential option. Signed, Shopping for the Best Deal ________________________ Dear Best Deal, After […]

FDA Approves NovoSeven庐 RT for Glanzmann鈥檚 Thrombasthenia

July 8, 2014

On July 7, 2014, the US Food and Drug Administration (FDA) approved NovoSeven庐 RT, a recombinant factor VIIa product manufactured by NovoNordisk, as the first recombinant treatment for Glanzmann鈥檚 Thrombasthenia (GT). The approved indication is for bleeding episodes and perioperative management for patients in whom platelet transfusions, with or without antibodies to platelets, is ineffective. […]

Bayer to Develop Hemophilia Gene Therapy Treatment

June 23, 2014

Dimension Therapeutics, a Cambridge biotechnology startup, has struck a deal worth up to $252 million with the pharmaceutical giant Bayer HealthCare to develop a gene therapy to treat hemophilia, a rare disease that prevents blood from clotting. The goal of the prospective treatment, which is not yet in clinical trials, is to repair a faulty […]

Dear Addy: Educating the Emergency Room

June 23, 2014

Dear Addy, We went out of town for vacation and I had to take my son to the ER for a bleed due. Unfortunately, none of the doctors were familiar with hemophilia. I knew more than they did. Instead of comforting my son, I spent my time educating doctors. Is there something I can do […]

Welcoming Our New Policy Interns

June 16, 2014

Earlier this year we opened applications for an eight week policy & advocacy internship* for this summer. We are excited to introduce you to the two candidates that we selected! Lewis and Maria are part of the bleeding disorders and have been chosen 聽because of their leadership qualities and interest in the field of policy […]

Supportive Dad With Creative Solutions

June 13, 2014

What is a father to do when he has grown up with an intense needle phobia and now discovers his first-born son has been diagnosed with severe hemophilia? Well, in the Mell home we got very creative. Our family has always made it a point to face our daily struggles as a complete unit, relying […]

Share Your Successes

May 2, 2014

While there is no 鈥渟pecial鈥 diet per say for people with bleeding disorders, it is especially important for those affected to pay attention to what they eat.聽 Not only is a diet rich in lean protein, fruits and vegetables helpful in maintaining a proper weight, it also provides natural sources of many vitamins, minerals and […]

Everyday Health: Dr. Sanjay Gupta Explains Hemophilia Myths & Facts

April 28, 2014

During聽Hemophilia Awareness Month聽we reached over 300K people on social media by posting a fact-a-day about bleeding disorders. Dr. Sanjay Gupta’s staff from聽Everyday Health, saw our efforts and reached out to us about working together on a piece about hemophilia. In honor of World Hemophilia Day, this informative article launched. __________________________________ Title:聽Myths and Facts About Hemophilia […]

Positive Life: Barry Haarde Road Tripping Again

April 20, 2014

(Positive Life): Bob Leahy:聽Barry. You鈥檙e off on another trip. Tell us about this one. Barry Haarde: This year鈥檚 ride is the shortest but fastest ride of the three and departs from L.A. on Easter Sunday and rolls all the way to Savannah, GA, which amounts to about 2,900 miles over a period of 27 days, […]

Dear Addy: Employee Disclosure

March 3, 2014

  Dear Addy, Should I tell my work I have hemophilia? I am worried the company might hold my hemophilia against me. I do not want the people at my work to think I can鈥檛 do my job or that I will be using too many sick days. Chronically Fearful ____________________________ Dear Fearful, Your concerns […]

Hazy Shade of Winter

February 19, 2014

The first day of school is supposed to be hot, sunny and bright. Thomas鈥檚 first day of school 鈥 actually his second first day of school 鈥 was on February 4, 2014 and only had a high of fifteen degrees Fahrenheit.聽 It was not your typical first day of school in many ways. It was […]

A Caregiver’s Perspective: My Life As I Know It

January 9, 2014

My husband has a bleeding disorder called hemophilia. Prior to beginning a relationship with him, I did not have an understanding of hemophilia and the intrusive nature it can have on someone鈥檚 life and marriage. My minuscule understanding of hemophilia only consisted of someone 鈥渂leeding a lot鈥 if they had an open wound. It was […]

Inhibitor Family Camp: Our Own Kind of Oz

December 20, 2013

What is Inhibitor Family Camp? Hemophilia Inhibitor Family Camp was founded in 2010 by聽Comprehensive Health Education Services (CHES), and is made possible through an educational grant provided by Novo Nordisk. There are currently two programs held annually, both take place at camps that are part of the Serious Fun Network (formerly known as The Hole […]

Welcome to Infusing Love: A Mom’s View

February 19, 2013

                Moms need a safe place to land sometimes. With that in mind, HFA is launching a blog dedicated to all things mom!聽In this safe spot, moms of a child with a bleeding disorder will be able to read stories and draw inspiration from like-minded (and similarly crazed) […]


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