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Infusing Love: Tough Questions to Answer

March 11, 2015

I was starting to get Ryan, my youngest, ready for bed while Logan hovered around us. Logan loves Ryan, and wants to be near him always. It is incredibly sweet. But on this particular day Logan was paying close attention to Ryan, and after a few moments Logan casually asked, 鈥淲hen does Baby Ryan get […]

Infusing Love: A True Black & Blue Sensation

March 4, 2015

While the rest of the world is debating whether a dress is black and blue or gold and white, one thing I know for certain is that my son, Thomas, has been black and blue many times over the last eleven years. Do you think the world understands why? You might remember HFA鈥檚 Hemophilia Awareness […]

Biogen Idec and Sobi See Progress in Pediatric Hemophilia B Study

February 27, 2015

This is an edited version of a press release from Biogen Idec. To read the full release, please聽click here. ____________________ Biogen Idec聽 and聽Swedish Orphan Biovitrum聽AB announced positive top-line results of the Kids B-LONG Phase 3 clinical study that evaluated the safety, efficacy and pharmacokinetics of ALPROLIX庐聽[Coagulation Factor IX (Recombinant), Fc Fusion Protein] in children under […]

Infusing Love: A Life Never Imagined

February 25, 2015

Have you ever signed up for something you felt you were not quite qualified for, but went ahead and did it anyway? I have, and I鈥檓 preparing to do it again.鈥 Several years ago, when I first heard about Washington Days, I never imagined myself actively engaging with legislators.聽 For most of my life, I […]

Walgreens Infusion Services Becoming a Private Independent Company

February 19, 2015

  Walgreen Co., a wholly owned subsidiary of Walgreens Boots Alliance, Inc. announced on January 20, 2015 that it has signed a definitive agreement with Madison Dearborn Partners (MDP), a leading private equity firm based in Chicago, under which MDP will acquire a majority interest in Walgreens Infusion Services. With more than 30 years of […]

Infusing Love: An Unexpected Haven

February 18, 2015

I鈥檇 be lying if I said my nerves weren’t through the roof upon entering the gates to the Taylor Family Foundation鈥檚 Camp Arroyo. To say that going to a family camp took me out of my element would be an understatement. I had no idea what I was getting myself into or what to expect. […]

Living Fit With von Willebrand Disease

February 13, 2015

One of the most common bleeding disorders in women is von Willebrand Disease (vWD), which occurs in about 1% of the US population. Heavy bleeding is one of the most common problems women report to their doctors. It affects more than 10 million American women each year. This means that about one out of every […]

Octapharma Launches Co-Pay Assistance Program

February 6, 2015

Octapharma USA announced on聽January 27, 2015 information about a new financial support program for the bleeding disorders community. The Octapharma Co- Pay Assistance Program is available to von Willebrand鈥檚 Disease (VWD) patients who are currently receiving wilate庐 [von Willebrand Factor/Coagulation Factor VIII Complex (Human)] or have a prescription to begin therapy. The new program offers […]

FDA To Review CSL Behring’s New Long-Lasting Hemophilia B Product

February 4, 2015

CSL Behring聽announced that the U.S. Food and Drug Administration (FDA) has accepted for review its Biologics License Application (BLA) for the marketing authorization of its long-acting fusion protein linking recombinant coagulation factor IX with recombinant albumin (rIX-FP). Upon FDA approval, rIX-FP will provide hemophilia B patients with a long-acting treatment option with dosing intervals up […]

Biogen Idec Forms Partnership to Focus on Gene Therapy for Hemophilia

January 30, 2015

Biogen Idec, Fondazione Telethon, and Ospedale San Raffaele have entered into a worldwide collaboration to jointly develop gene therapies for the treatment of both hemophilia A and B. The agreement will combine聽San Raffaele – Telethon Institute for Gene Therapy鈥檚 (TIGET)聽extensive expertise in creating new gene therapy strategies and developing them from the bench to bedside […]

Infusing Love: Hemophilia is the Easy Part

January 7, 2015

鈥淗emophilia is the easy part.鈥 I realized that both my son and I have said this recently.聽 There are many physical and emotional issues that we both face stemming from Max鈥檚 hemophilia, but the actual condition is not one of them. I鈥檒l say it again: 鈥淗emophilia is the easy part.鈥 I鈥檓 not even sure when […]

CSL Behring Submits FDA Approval for Long Acting Hemophilia B Product

December 16, 2014

CSL Behring announced on Tuesday, December 16, 2014 that it has submitted a biologics license application (BLA) to the United States Food and Drug Administration (FDA) for the marketing authorization of its long-acting fusion protein linking recombinant coagulation factor IX with recombinant albumin (rIX-FP). Once approved by the FDA, rIX-FP (Coagulation Factor IX {Recombinant}, Albumin […]

Pfizer Establishes Gene Therapy Partnership

December 8, 2014

Pfizer Inc. announced on Monday, December 8, 2014 聽two strategic decisions to expand the company鈥檚 rare disease research and development activities through the establishment of a gene therapy platform to investigate potential treatments for patients. First is an agreement with Spark Therapeutics to develop SPK-FIX, a program incorporating a bio-engineered AAV vector for the potential […]

Baxter Seeks OK to Sell New Hemophilia Drug

December 4, 2014

Baxter International submitted an application to the Food and Drug Administration for the approval of a key hemophilia drug. The drug, BAX 855, is an extended-release version of its flagship hemophilia drug Advate, which is sold in dozens of countries. The treatment is seen as a key part of the company’s drug pipeline and its […]

Promising Gene Therapy Results in Treating Hemophilia B

November 20, 2014

On November 19, St. Jude Children’s Research Hospital announced the results of their ongoing gene therapy partnership with University College London and the Royal Free Hospital. The report indicates success in the trial, which used a modified adeno associated virus (AAV) 8 to deliver genetic material for making Factor IX in Hemophilia B patients. In […]

Bullying: A Serious Problem for Kids with a Chronic Condition

October 9, 2014

Children with special health needs such as a bleeding disorder can be at an increased risk of being bullied because of issues like physical vulnerability, social skill challenges, and intolerant environments.聽Kids with hemophilia may become a target when they use crutches, are limited to certain activities during recess/gym classes, have a visible PICC line/port, or […]

Leveling with the FDA About Hemophilia Inhibitors

September 23, 2014

On Monday, September 22, several members of the bleeding disorders community came out to聽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 to […]

HFA’s Excutive Director to FDA: Treatment is Not One Size Fits All

September 23, 2014

On Monday, September 22,聽several members of the bleeding disorders community came out to聽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 to share […]

Adult Male Disccuses Pain Management and Treatment with FDA

September 23, 2014

On Monday, September 22,聽several members of the bleeding disorders community came out to聽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 to share […]

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 […]

How a Liver Transplant Changed My Life

April 25, 2014

One of the most important things you can do for your health is to have a proper diet. What you put into your body聽affects how you look and feel. Maintaining a healthy weight is especially important for individuals with a bleeding聽disorder. Being at a healthy weight can reduce the number of bleeding episodes you experience, […]


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