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Community Voices

HFA Welcomes Three New Member Organizations

October 12, 2010

FOR IMMEDIATE RELEASE:聽聽聽聽聽聽聽聽聽聽聽 October 11, 2010 Washington: DC:聽 Hemophilia Federation of America (HFA), a community focused national organization serving the needs of individuals and families with bleeding disorders since 1994, is pleased to announce the addition of three new member organizations in 2010 as indicated below: The Connecticut Hemophilia Society, Inc. (CHS), founded on February […]

Michael Bishop — You Are Not Alone

September 28, 2010

By Michael George Bishop My name is Michael George Bishop and I have Hemophilia B with inhibitors. I decided to share my story with the Hemophilia Federation of America (HFA) and “Voices” because I wanted other kids like me, with hemophilia -and those in physical or emotional pain – to know they are not alone […]

HFA President, Brayshaw Host President Obama in Backyard

September 25, 2010

Washington, DC:聽 President Barack Obama held a backyard discussion on healthcare reform at the home of Hemophilia Federation of America’s President, Mr. Paul Brayshaw.聽聽Paul, an individual with Hemophilia is a resident of Falls Church, VA. He聽opened the forum with a statement regarding the positive impact of the Affordable Care Act as it relates to individuals […]

URGENT: Voluntary Market Withdrawal – September 23, 2010 Octagam [Immune Globulin Intravenous (Human)] 5% Liquid Preparation

September 24, 2010

Visit FDA link to learn more: <http://www.fda.gov/BiologicsBloodVaccines/SafetyAvailability/Recalls/ucm227133.htm>

Medical Alert: Shortage of DDAVP IV

September 24, 2010

NHF Medical Advisory #411: September 24, 2010 Shortage of DDAVP IV The Food and Drug Administration has issued a notice that there is currently a shortage of Desmopressin Acetate (DDAVP), Intravenous Formulation, due to increased demand and manufacturing delays. Three pharmaceutical companies currently distribute and market this product in the US.聽 Hospira reports that it […]

HFA President, Paul Brayshaw hosts President Barack Obama’s Backyard Health Care Policy Forum

September 22, 2010

For Immediate Release: Wednesday, September 22, 2010 Washington, DC:聽 President Barack Obama held a backyard discussion on healthcare reform at the home of Hemophilia Federation of America’s President, Mr. Paul Brayshaw.聽聽Paul, an individual with Hemophilia is a resident of Falls Church, VA. He聽opened the forum with a statement regarding the positive impact of the Affordable […]

The September 2010 FDA Patient Safety News is now available

September 10, 2010

Click here for the 2010 FDA Patient Safety News

NY Times Looking for Patients to Interview

September 8, 2010

聽From: National Association of Rare Disorders (NORD) Re: New York Times article regarding genetic testing and medical records The New York Times has contacted NORD for assistance in identifying patients to interview for a story on medical privacy and, specifically, what should be done when patients say they don’t want results from genetic tests in […]

New York City Hemophilia Chapter

August 11, 2010

Click here For the Immediate Release聽 New York City Hemophilia Chapter Names Glenn Mones Director of Communications New York, NY – August 10, 2010 – The New York City Hemophilia Chapter (NYCHC) has appointed Glenn Mones to the position of Director of Communications, according to chapter President Shari Bender. “We’re thrilled to have Glenn as […]

HFA Adds New Blood Brotherhood Sites

August 10, 2010

FOR IMMEDIATE RELEASE: Monday, August 9, 2010 聽Washington, DC: The Hemophilia Federation of America (HFA) is pleased to announce the addition of two new Blood Brotherhood sites, Hemophilia Foundation of Northern California (HFNC) and Hemophilia Foundation of Minnesota/Dakotas (HFMD). Other states hosting local community support groups include Tennessee, Texas, North Carolina, Arizona, New York, Illinois, […]

My Camp Family

July 23, 2010

Rocky believes that having hemophilia has provided him with many opportunities and credits his camp family for showing him the right path.

Hemophilia survivor Leeroy Carter turns 90

July 22, 2010

BY JOSHUA JAMERSON FREE PRESS SPECIAL WRITER Posted July 21, 2010 Leeroy Carter is a rare longtime survivor of hemophilia, a bleeding disorder that often shortens the life of those who have it. But the Highland Park resident has far surpassed his peers, becoming the oldest hemophilic in Michigan and the second oldest in the […]

Let Him Go Let Him Grow

July 22, 2010

Dennis and Denise have a teenage son with hemophilia, they encourage their son to focus on school because he needs to find a stable job with good insurance.

Winners announced for 2010 BioRx Educational Scholarships

July 21, 2010

News Release聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽 June 21, 2010 (Cincinnati, Ohio)聽聽 BioRx, a specialty pharmacy, and Hemophilia of North Carolina, a non-profit organization that assists and educates persons affected by bleeding disorders, announce the winners of the 2010 BioRx Educational Scholarships.聽 Each of the winners receives a $2,000 scholarship.聽 The scholarships are funded by BioRx through an educational grant, […]

Helping Out a Friend

July 21, 2010

Pam helped Ann through the diagnosis of her son’s bleeding disorder.

Friendship Through Tough Times

July 8, 2010

Jill & Kathy have supported each other through the toughest of times.

Living Life to it’s Fullest

June 29, 2010

Sean and Lesa talk about their family life and living with a bleeding disorder.

A Mother’s Story

June 22, 2010

Bert shares her experiences raising two boys with hemophilia.

Growing Up Different

June 22, 2010

Jim, Gio, and Tim talk about their life as young boys with hemophilia.

Roger the Cactus Farmer

June 11, 2010

Roger, a 67 year old with hemophilia is full of wisdom and life experiences.

American Plasma Users Coalition, A-PLUS, Seeks FDA-Community Research Agenda to Enhance The Safety of Our Nation’s Blood Supply

June 9, 2010

The Department of Health and Human Services, Advisory Committee on Blood Safety and Availability will be reviewing the current Food and Drug Administration (FDA) policy recommending that men wh have sex with another man (MSM) even one time since 1977 should be deferred indefinitely from donating blood. Click here for the Release

Joint Statement on Addressing the MSM Blood Ban by Groups Representing People Living with Hemophilia, Gay Men and People Living with HIV/AIDS

June 9, 2010

The Department of聽 Health & Human Services, Advisory Committee on Blood Safety and Availability will be reviewing the current Food and Drug Administration (FDA) policy recommending that men who have sex with another man (MSM) even one time since 1977 should be deferred indefinitely from donating blood.聽聽Click here for the Press Release.

Dads In Action

June 7, 2010

The HFA offers the Dads in Action Program as an educational and social support system designed to provide Dads with a sense of belonging as well as keys to strengthen the family unit.聽 The program focuses on building strong family ties within the context of having a bleeding disorder.聽 Program participants include both fathers of […]

Barry Haarde reaches out through ministry & exercise

June 3, 2010

Bleeding Disorder Community member Barry Haarde reaches out through ministry and exercise. For more information click here

Hemophilia Alliance Donation

June 3, 2010

The Hemophilia Alliance has just completed the 2010 funding cycle, again this year they have donated in excess of $300,000 to the hemophilia community. Alliance Foundation pdf

Bleeding Disorders Family Meets President Obama

May 21, 2010

The Forbes family shares their story of visiting the Oval Office.

Symposium 2010

May 12, 2010

Thanks for coming to HFA’s Symposium in Kansas City, MO! Hope you had a great time and we will see you next year!

May is National Hepatitis Month

May 10, 2010

May is National Hepatitis Month Earlier this year the Institute of Medicine (IOM) released a report on Viral Hepatitis in the United States and called for efforts to increase knowledge and awareness of this major public health problem. During the month of May, CDC and our public health partners are celebrating the 15th anniversary of […]

Access to Coverage for Young Adults

April 30, 2010

Posted April 29, 2010 By Jenny Backus, Acting Assistant Secretary for Public Affairs Young adults often have a hard time getting affordable health insurance.聽 Some go into jobs that don’t offer health benefits, some can’t afford it, and some are denied it because they have a pre-existing condition.聽 Those days are coming to an end.聽 […]


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