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Factor I Deficiency: A Voice for a Rare Community

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 […]

Ryan White_Anniversary

Remembering Ryan White 26 Years Later

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. Learn more about Ryan’s legacy by clicking […]

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HFA Observes February 29 As Rare Disease Day

The Hemophilia Federation of America (HFA) joins the National Organization for Rare Disorders (NORD) on February 29, and others around the world in observing Rare Disease Day. The purpose of this day is to focus attention on the needs of patients and families affected by rare diseases. In the U.S., any disease affecting fewer than […]

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Community Voices: An Inhibitor On The High Seas

Justin Levesque (pictured in the orange hat), poses with the crew aboard a ship bound for Iceland.  __________________________________________ Justin Levesque has severe hemophilia with an inhibitor. Justin recently had an opportunity of a lifetime when he spent nine days aboard a ship to Iceland as part of an art project that he developed. In this […]

VeinViewer

HFA Receives Donation of VeinViewer Flex

Christie Medical Holdings Inc., a global leader in portable vein imaging systems to aid in venipuncture procedures, has donated a VeinViewer® Flex to the Hemophilia Federation of America (HFA) as part of the Christie CARES philanthropy program. Based in Washington, D.C., the Hemophilia Federation of America serves as a consumer advocate for safe, affordable and […]

MaryAnn_mom blog

Infusing Love: It’s Like Riding A Bike

I’d like to make something very clear: I’m not one of those people who wake up in the morning dying to go for a bike ride! It’s more of a sigh, I guess I should go ride my bike… I first heard about Gears for Good from my friend, Diane. She told me about a […]

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Living with Hemophilia: A Young Adult Perspective

The transition to adulthood is an exciting time for any young adult, and can include living on their own for the first time, beginning a job, or starting a college/higher education experience. However, this also means young adults must learn quickly how to juggle the inevitable increase of personal responsibility. Dakota, age 20, is a PharmD […]

medical_news

FDA Clears Two New Oral Drugs for Hepatitis C

Note: This article originally appeared on Medscape. To read the FDA release on Daklinza (genotype 3), click here. For the FDA release regarding Technivie (genotype 4), click here. The US Food and Drug Administration (FDA) approved two new drugs today for hepatitis C (HCV), one for genotype 3 and the other for genotype 4. The first medication is […]

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My Dad: As Seen By A Hemo Mom & Daughter

    I wish I could run on the beach with my Dad. This thought went through my mind as I watched a father and daughter on the beach a few weeks ago.  As I watched the dad and daughter run into the distance, I started to feel sad. I never saw my dad run.  […]

Barry

Cycling 4,000 Miles for Hemophilia Awareness

Note: This story originally appeared on PRWeb. Barry Haarde is a participant in HFA’s annual Gears for Good ride from West Virginia to Washington, DC. Cyclist Barry Haarde is on a mission to raise awareness about hemophilia and encourage individuals to support needy hemophilic children through Save One Life, which supports more than 1,200 individuals with […]

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Assisting and Advocating for the Bleeding Disorders Community