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HFA’s Statement to the FDA’s BPAC on Blood Donation Policy

Former HFA Board President Paul Brayshaw recently delivered a statement on behalf of our organization before the Food and Drug Administration’s Blood Product Advisory Committee (BPAC) regarding a proposed change to the policy on blood donations from men who have sexual contact with men. In this statement, Mr. Brayshaw stated that, while we do not support […]

Medical research

Promising Gene Therapy Results in Treating Hemophilia B

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 […]

medical_news

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

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.  This study suggests that inhibitor incidence is higher in previously untreated patients (PUPs) with severe hemophilia A that are using Kogenate/Helixate. The Food and Drug Administration (FDA) and European Medicines Agency (EMA) have […]

Supreme Court

Consumer Guide To The Supreme Court’s Action On ACA Subsidy Issue

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

Blood Sisterhood_Rachel

The Silent “Carriers” of Hemophilia

Women have been the silent “carriers” 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’s Blood Sisterhood program was established […]

Dear Addy Header_Updated

Dear Addy: In-Network

[glossary_exclude]   Dear Addy, I have heard from a friend that their hemophilia treatment center (HTC) is no longer “in-network” for their insurance plan but instead is “out-of-network.” What does this mean and should I be worried about my insurance plan changing?  Signed,  Nervous Over Network _______________________ Dear Nervous, The term “out-of-network” refers to those […]

November 16

Are you Ready for Open Enrollment?

[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 […]

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Dear Addy: Privacy Protection

Dear Addy, I rarely attend bleeding disorder related events because I want to protect my privacy. When I do attend it seems like every time I turn around people try to get me to complete a survey. Why is that? How can I protect my privacy? ~Under the Radar _______________________ Dear UR, Some companies, organizations, […]

medical_news

FDA Approves First Combination Pill to Treat Hepatitis C

The U.S. Food and Drug Administration today approved Harvoni (ledipasvir and sofosbuvir) to treat chronic hepatitis C virus (HCV) genotype 1 infection. Harvoni is the first combination pill approved to treat chronic HCV genotype 1 infection. It is also the first approved regimen that does not require administration with interferon or ribavirin, two FDA-approved drugs […]

CDC_women with bleeding disorders

New Study Findings on Young Women and Bleeding Disorders

[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 […]

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Assisting and Advocating for the Bleeding Disorders Community