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Adult Male Disccuses Pain Management and Treatment with FDA

On Monday, September 22, several 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 to share […]

Adult Man Shares Seven Decades of Hemophilia Treatment with the 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 to share […]

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 […]

Mickey

Hemophilia is Only a Handicap if You Let it Be

Below is an excerpt from our one-of-a-kind Dads’ book, Dads in Action: Real Stories from the Bleeding Disorders Community. This book is free to all dads who sign up for our Dads in Action program. ___________________________________________________ I am 38 years old. I live with severe Hemophilia A, but I don’t suffer from it. I have […]

Mark

Living With a Bleeding Disorder Across the Decades

Blood Brotherhood is a national program for adult men with a bleeding disorder and provides a sense of community through education and support. The below articles are written by Blood Brothers enrolled in the program and features their stories of what growing up was like during different decades. _____________________________________________ Carl | Severe Hemophilia  B | 1960s – […]

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 […]

pics - Dan_9

Infusing Love: A Father’s Perspective

Today HFA is proud to present a special “Infusing Love” blog — an excerpt from our new book, “Dads in Action: Real Stories from the Bleeding Disorders Community.”  To order your FREE copy of the book, click HERE. Parenthood began for me as it has for many others; I was a first-time father, venturing through […]

Dads in Action_Mel

Supportive Dad With Creative Solutions

What is a father to do when he has grown up with an intense needle phobia and now discovers his first-born son has been diagnosed with severe hemophilia? Well, in the Mell home we got very creative. Our family has always made it a point to face our daily struggles as a complete unit, relying […]

Medical News

CMS: Medicare Will Cover HCV Screening

The Centers for Medicare & Medicaid Services (CMS) has determined the following: The evidence is adequate to conclude that screening for Hepatitis C Virus (HCV), consistent with the grade B recommendations by the U.S. Preventive Services Task Force (USPSTF), is reasonable and necessary for the prevention or early detection of an illness or disability and […]

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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Assisting and Advocating for the Bleeding Disorders Community