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CDC Webinar: Reproductive Issues in Women with Bleeding Disorders

January 28, 2015

On Thursday, January 22, 2015, the聽CDC聽hosted a webinar to help women with a bleeding disorder recognize the signs and symptoms of reproductive issues. The webinar was facilitated by聽Andra H. James, MD. Dr. James is Consulting Professor of Obstetrics and Gynecology at Duke University, where she also has an appointment in the Division of Hematology. Dr. […]

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 […]

FDA approves Viekira Pak to treat Hepatitis C

January 5, 2015

The U.S. Food and Drug Administration today approved Viekira Pak (ombitasvir, paritaprevir and ritonavir tablets co-packaged with dasabuvir tablets) to treat patients with chronic hepatitis C virus (HCV) genotype 1 infection, including those with a type of advanced liver disease called cirrhosis. Hepatitis C is a viral disease that causes inflammation of the liver that […]

Infusing Love: I Get By With Help From My Friends

December 31, 2014

              I am a true believer in the saying, 鈥渒nowledge is power.鈥 However, I also believe that the knowledge you attain must come from the correct source and at the right time. I have learned that this is even more true when it comes to hemophilia and motherhood. It […]

Baxter Files For FDA Approval of Recombinant Treatment For von Willebrand Disease

December 22, 2014

Baxter International Inc. today announced that the company has submitted a biologics license application (BLA) to the United States (U.S.) Food and Drug Administration (FDA) for the approval of BAX111, the first highly-purified recombinant von Willebrand Factor (rVWF) in clinical development as a treatment for patients with von Willebrand disease, the most common type of […]

Infusing Love: Anything is Possible

December 17, 2014

His name was Adam. And when I met him, I let out a huge sigh of relief. He was rather good-looking, and he seemed smart, strong, capable and perhaps most importantly, healthy. (Before you jump to any conclusions, this wasn鈥檛 a blind date.) My friend Carrie had introduced me to Adam. They shared a ski […]

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 […]

Infusing Love: We Are Stronger Together

December 10, 2014

In March 2014 I attended my first HFA conference, and for the first time in my new journey as a hemophilia mother I didn鈥檛 feel alone and left truly inspired.聽 Beyond encouragement, I also received education which helped me to accept my own diagnosis of hemophilia. For example, I met Julie, who told me about […]

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 […]

Update #3: NHF’s MASAC Assessment on Inhibitor Studies

December 3, 2014

On September 24, 2014, the medical journal,聽Blood, came out with a study called,聽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聽Kogenate/Helixate.聽 The聽World Hemophilia Federation聽(WHF) issued a聽statement on October 6,聽and another […]

A Caregivers Perspective: Hemo Wife Uncorked

November 29, 2014

[glossary_exclude] I worry when he’s late coming home and I haven’t heard from him in a while. I worry when I can’t get a hold of him on the phone for hours. I worry when he boards a plane for a trip. I worry when we do any physical activity where there’s a possibility he […]

A Caregiver’s Perspective: The Partner

November 24, 2014

I knew I was on to something good when I arrived home from meeting Brent for the first time. We had a fun night out after a spontaneous meeting through a mutual friend. When I got home, I broke the unwritten rule of waiting a while to text someone new. I was thrilled when he […]

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 […]

Update #2: FDA will Review Study Suggesting Higher Inhibitor Incidence in PUPS

November 20, 2014

On September 24, 2014, the medical journal,聽Blood, came out with a study called,聽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聽Kogenate/Helixate. The Food and Drug Administration聽(FDA)聽and European Medicines Agency (EMA)聽have […]

Infusing Love: From One Mom to Another

November 19, 2014

My non-hemophilia mom friends have often say to me, 鈥淚 just don’t know how you do it. I just can’t imagine raising a child with hemophilia.鈥 I normally reply with, “my son with hemophilia is my baby, and I’ll do anything for him.” Earlier this summer, this very conversation played out between myself and HFA […]

A Caregiver’s Perspective: The Unaffected Sibling

November 17, 2014

My brother Evan was born on July 3rd, 2007. Two days after he was born, he was diagnosed with severe hemophilia A. I was eight years old when he was born and had never heard of this condition. It was difficult for me to grasp that my little brother would not live a 鈥榥ormal鈥 life. […]

Consumer Guide To The Supreme Court鈥檚 Action On ACA Subsidy Issue

November 13, 2014

The Supreme Court on Friday, November 7, 2014 agreed to hear a case on a subject that鈥檚 important to millions of people who receive subsidies to help purchase coverage under the health-care law. Friday鈥檚 decision follows earlier action in July when two U.S. appeals courts issued conflicting rulings on the issue. Kaiser Health News, Mary […]

The Silent 鈥淐arriers鈥 of Hemophilia

November 13, 2014

Women have been the silent 鈥渃arriers鈥 of hemophilia and lived with other undiagnosed bleeding disorders for too long. HFA is committed to providing women with the information and support they need to reach a diagnosis and continue that support through the stages of their life with a bleeding disorder. HFA鈥檚 Blood Sisterhood program was established […]

Infusing Love: Finding Time for Me

November 12, 2014

Often times I am talking with other moms and the conversation comes up about how tired we are or how we find it difficult to make time for ourselves. As caregivers, we are constantly doing for others. We are making meals, help with homework, running errands, or being a taxi for our kids. Being a […]

Are you Ready for Open Enrollment?

November 5, 2014

[glossary_exclude]Summer is over and already it is time to start making your list and checking it twice. No, not that list; the list of the things you need to make sure your health insurance plan covers when your open enrollment period starts. An open enrollment period is the time when individuals can enroll themselves and […]

CSL Behring Announces 2014 Gettin’ in the Game Winners

November 2, 2014

CSL Behring’s Gettin’ in the Game program, like our FitFactor program, encourages patients with hemophilia, von Willebrand disease (vWD), and other bleeding disorders to become active and stay active, touting the physical and mental benefits of sports and other activities. Recently, CSL Behring held their 13th Junior National Championship program, an annual golf and baseball […]

November is National Caregiver Month

November 2, 2014

The bleeding disorders community is made up of dedicated caregivers. Moms, dads, grandparents, partners, spouses, and friends play a crucial supportive role in their loved one鈥檚 well-being. However, caregivers can often feel stressed, overwhelmed and burnt out. Therefore, it is important for caregivers to remember to take time just for them. Caregivers often feel guilty […]

Stanford University: New Form of Gene Therapy Could Cure Hemophilia in Mice

October 30, 2014

[glossary_exclude] A technique developed by Stanford researchers could provide a safer, longer-lasting method of replacing faulty, disease-causing genes with working copies. The ability to pop a working copy of a faulty gene into a patient鈥檚 genome is a tantalizing goal for many clinicians treating genetic diseases. Now, researchers at the Stanford University School of Medicine […]

FDA Approves New Treatment for Rare Form of Hemophilia

October 25, 2014

On Friday, October 24, 2014, the U.S. Food and Drug Administration approved Obizur [Antihemophilic Factor (Recombinant), Porcine Sequence] for the treatment of bleeding episodes in adults with acquired hemophilia A (acquired Factor VIII [FVIII] deficiency). Acquired hemophilia A is a rare, but potentially life threatening, bleeding disorder caused by the development of antibodies (immune system […]

PPTA: Ebola Virus and Plasma Protein Therapies

October 14, 2014

The recent outbreak of Ebola virus has caused great concern among many people. We read stories about isolation, experimental therapies and many deaths. It is understandable that this raises questions for persons who are more vulnerable to infections such as persons with immunedeficencies. We have seen questions and concerns expressed by various persons and would […]

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 […]

New Study Findings on Young Women and Bleeding Disorders

October 9, 2014

[glossary_exclude] This information was originally sent by the Division of Blood Disorders in the National Center on Birth Defects and Developmental Disabilities (NCBDDD) at the Centers for Disease Control and Prevention (CDC) in an email on Wednesday, October 8, 2014.[/glossary_exclude] ____________________________________ Information about bleeding disorders is vital for young women. It can help them recognize […]

Brighter Outlook for Community Members Affected by HCV

October 8, 2014

Hepatitis C (HCV), often referred to as the 鈥渟ilent killer鈥, has been a serious crisis for the bleeding disorders community, who contracted the disease from contaminated blood products prior to the early 1990s. Treatments exist, but with many difficult side effects and mediocre efficacy. However, advocacy in the bleeding disorders community has contributed to the […]

Dear Addy: Unaffected Siblings

October 7, 2014

Dear Addy, I have two sons with hemophilia and one daughter who is not affected by a bleeding disorder. My two sons get so much attention and I know that my daughter feels left out. How can I help my daughter understand that we love her just as much as her brothers? Signed, Dad of […]


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