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How Our Interns Saw The HFA Hill Day

Last week,  members of the bleeding disorder community flew to Washington, DC to speak with their US House and Senate representatives asking them to support HR 460, the Patients’ Access to Treatment Act. This important piece of legislation prohibits insurance companies from charging more for the drugs that they place into specialty tiers, than they […]

Industry News

Bayer to Develop Hemophilia Gene Therapy Treatment

Dimension Therapeutics, a Cambridge biotechnology startup, has struck a deal worth up to $252 million with the pharmaceutical giant Bayer HealthCare to develop a gene therapy to treat hemophilia, a rare disease that prevents blood from clotting. The goal of the prospective treatment, which is not yet in clinical trials, is to repair a faulty […]

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Dear Addy: Educating the Emergency Room

Dear Addy, We went out of town for vacation and I had to take my son to the ER for a bleed due. Unfortunately, none of the doctors were familiar with hemophilia. I knew more than they did. Instead of comforting my son, I spent my time educating doctors. Is there something I can do […]

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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 […]

MomsBlog_Hill Visits

Infusing Love: Knocking On Capitol Hill’s Doors

Advocacy used to scare the devil out of me. I avoided anything that had to do with going to my state capitol or writing a letter to a legislator.  Advocacy sounded like downright torture and I didn’t want any part of it. A perspective change came in the late fall of 2005. My husband called […]

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Welcoming Our New Policy Interns

Earlier this year we opened applications for an eight week policy & advocacy internship* for this summer. We are excited to introduce you to the two candidates that we selected! Lewis and Maria are part of the bleeding disorders and have been chosen  because of their leadership qualities and interest in the field of policy […]

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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 […]

Project RED

Project RED: Reaching Everyone Directly

A word that we hear frequently right now is “access”—access to quality care, resources, education, community, and other people affected by a bleeding disorder. Our Blood Brothers and Sisters everywhere have these concerns. The recent rise in the number of bleeding disorder organizations around the country (4 new chapters and member organizations) in the last […]

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Dear Addy: Small Business Health Options Program (SHOP)

Dear Addy, I am a small business owner with fewer than 25 employees and I have a child with hemophilia. The private insurance I provide my employees has gotten very expensive. I don’t know if I can afford it any more. Can you let me know what options I have? I don’t want to stop […]

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 […]

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