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Blood Brother Shares Hemophilia Treatment Experiences With FDA

On Monday, September 22,  members of the bleeding disorders community came out to 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. Patients and advocates of every age, every background, and with several different conditions came out […]

Intern_PlasmaCenter

HFA Interns Tour MD Plasma Center

Recently our summer policy interns, Maria and Lewis, toured a Maryland plasma collection facility to learn the multi-step testing and purification process to ensure its safety and efficiency. ______________________________________ 1) Was this your first time visiting a plasma center? What did you expect it to be like? Lewis: This was my first time visiting a plasma […]

champion_award_congress

HFA ‘Champion Award’ Given to 4 Members of Congress

On June 18, 2014, we hosted a successful Hill Day in Washington, DC alongside an online Virtual Hill Day to gain support for bill HR 460, The Patients’ Access to Treatment Act in the US Senate, and other issues like the ability for third-party non-profits to help make payments on behalf of patients, and funding for the Centers for […]

Dear Addy Banner

Dear Addy: Finding The Right Hematologist

Dear Addy, What skills and experience should I look for in a hematologist? My son was recently diagnosed with hemophilia and I’m willing to move to another city, so my son can get the best care possible. Signed, Diligent Patient _____________________ Dear Diligent, Most importantly you want to make sure that all of the hematologists […]

Medical News

‘Blood Transfusion’ Publication Releases Special Edition

Blood Transfusion, a quarterly print and online publication of the Italian Society on Transfusion Medicine and Immunohaematology (SIMTI), released a special edition at the WFH World Congress in Melbourne entitled “Haemophilia Centre Accreditation Systems and Networks of Centres of Expertise for Rare Diseases in Europe and North America”.  This report supplement reviews current efforts in […]

CMS Explanation in Response to PSI Letter to HHS Secretary

In response to letters by Patient Services Incorporated (PSI) and other patient advocacy groups, CMS has released a further explanation on the November 4, 2013, Frequently Asked Question (FAQ) document. As you will remember, CMS called into question the use of premium assistance, the FAQ stated: The Department of Health and Human Services (HHS) has […]

FDA Issues Positive Review for Gilead’s Hep C Drug

By Matthew Perrone, AP Health Writer Associated Press -The Food and Drug Administration issued a positive review Wednesday for a highly anticipated hepatitis C drug from Gilead Sciences, saying the pill cures more patients in less time than currently available treatments. The agency posted its review of Gilead’s sofosbuvir online ahead of a meeting Friday where […]

Maine to Allow Prescription-Drug Imports

AUGUSTA, Maine (Wall Street Journal) — The hunt for cheaper prescription drugs long has led consumers to reach beyond U.S. borders, but under a Maine law set to take effect Wednesday, their search now will have the state’s blessing. The law, the first of its kind, sanctions the direct purchase of mail-order drugs from some […]

A Situation, Mark Antell

Just a few decades ago, hemophilia did not just mean you had a bleeding disorder. It also meant that you were at high risk of being infected with blood-borne illnesses. Mark Antell knows this well. He received Hepatitis C through a blood transfusion sometime in the 60s or 70s. And the AIDS crisis of the […]

Raising a Family with Hemophilia

Chuck and Vicki talk about their family life with hemophilia.

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Assisting and Advocating for the Bleeding Disorders Community