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Dear Addy: Legislative Day Participation and Follow-up

Dear Addy, I recently participated in a state legislative day and left feeling great about what we accomplished. How do I maintain this energy and continue to advocate for the issues I am concerned about? -Eager Advocate Dear Eager, Congratulations on participating in your state legislative day. This is an important way to advocate for […]

HFA Champion Award Given to 2 Members of Congress

On June 22, 2016, we hosted our 3rd Annual Patient Fly-In in Washington, DC alongside an online Virtual Hill Day to gain support for bill HR 1600, The Patients’ Access to Treatment Act and for HR 3742, The Access to Marketplace Insurance Act, other issues like the ability for third-party non-profits to help make payments on behalf of patients, and improving […]

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Intern Introspective: Introducing Camila

Two weeks ago we introduced you to one of our Policy & Government Relations intern’s, Eric. This week, we are pleased to feature our second summer intern, Camila. _______________________________________________________________________ What school do you attend? What is your major? I am a rising senior at the University of Richmond in Richmond, Virginia. I am completing a […]

Dear Addy: National Safety Month

Dear Addy, My son is about to start summer vacation. While he is excited, I’m concerned about all of the activities he will be doing. It seems everything he enjoys involves risking a bleed. How do I monitor my child’s safety while allowing him to have fun this summer? Signed, Anxious About Summer Break Dear […]

Intern Introspective: Introducing Eric

Earlier this year, we opened applications for a ten-week policy and government relations internship* for this summer. We are excited to introduce you to the two candidates that we selected! Eric and Camila are part of the bleeding disorders community and have been chosen because of their leadership qualities and interest in the field of […]

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May is Hepatitis Awareness Month

In 2001, the Centers for Disease Control (CDC) and Prevention designated the month of May as Hepatitis Awareness Month to bring awareness and attention to those living with viral hepatitis. In the 1980s and 1990s, thousands of people with hemophilia contracted HIV and Hepatitis C (HCV) from the contaminated blood supply transmitted by clotting factorproducts. […]

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Letter to FDA Commissioner Regarding Biosimiliar Safety & Approval Process

HFA is proud to be part of the Patients for Biologics Safety & Access (PBSA). PBSA is a coalition of 24 patient advocacy organizations dedicated to protecting patient access to safe and effective biologics. Together, this coalition represents millions of Americans who suffer from serious, life-threatening diseases that are difficult to diagnose and treat. As […]

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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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Dear Addy: Pharmacy Choice

Dear Addy, Last year, my friend with hemophilia started working for a specialty pharmacy. Since then, he’s been pressuring me to switch from my current pharmacy to his. Initially, he was polite and nice, taking me to lunch and then dinner to ask for my business. Each time, I told him I am content with […]

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Zika Virus and the Blood Supply

We’ve recently received questions from the bleeding disorders community about the Zika Virus and the possibility of transmission via the blood supply. Zika is primarily transmitted through the bite of infected Aedes mosquitoes, the same mosquitoes that spread Chikungunya and dengue. HFA has been in contact with the Centers of Diseases and Control (CDC) and […]

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