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Community Voices

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 […]

The Murry Family

April 21, 2010

A Tennessee couple talks about raising their 3 children and juggling their life with hemophilia.

Raising a Family with Hemophilia

April 21, 2010

Chuck and Vicki talk about their family life with hemophilia.

Today is the 20th anniversary of the death of Ryan White

April 8, 2010

Community member archivist, Barry Haarde has a wonderful collection of community historical news.聽聽He has聽been聽distributing聽the information聽via “archieve e-newsletter.聽聽The HFA would like to acknowledge and thank Barry for allowing us to share with the greater community his post today, honoring the anniversary of the death of Ryan White: Today is the 20th anniversary聽of the death of Ryan […]

College Student Shares His Story

March 25, 2010

Christian Rodriguez, an HFA聽 advocacy intensive participant is an inspiration to the bleeding disorders community.聽 Christian has made it his mission to improve the lives of himself and the people in his community by sharing his story.聽 The goal of the intensives program is to inspire participants to take an active, grassroots approach to effecting […]

A Tribute to Dr. Robert Janco

March 10, 2010

Disease Area Lead, Pfizer Hematology Trusted colleague, outstanding clinician and friend of the hemophilia community, Dr. Robert “Bob” Janco passed away on March 9 after a short but aggressive illness. Bob had a wealth of experience in the diagnosis and clinical management of adults and children with congenital bleeding disorders.聽He most recently served at Disease […]

HFA Press Release: Facebook Fans Bring Community Friends Together

March 10, 2010

FOR IMMEDIATE RELEASE: Wednesday, March 10, 2010 Washington, D.C.:聽 There is no doubt that the social media trend has changed how the world communicates. From world events and tragedies to simply linking people together in a personal day-to-day style, social forums like Facebook have made an impact.聽 At the Hemophilia Federation of America (HFA), this […]

Fifth Generation Blood Brother

March 6, 2010

John Reed inspires with his positive outlook on his life with hemophilia.聽 John decided early on that he was not going to let hemophilia control his life, he was going to take control and live his life.

Communicating With Your State Legislator

February 13, 2010

Mark created a Hemophilia Task Force group in Connecticut.聽 This group had state legislators, national non-profit advocates, patients, and hemophilia doctors working together to ensure people with bleeding disorders in CT receive the best care possible.聽 What are you waiting for?! YOU can make a difference in your state too!

Infusion Set Needles [Manufactured by Nipro for Exelint]: Recall

January 26, 2010

Exel/Exelint Huber needles, Exel/Exelint Huber Infusion Sets Exel/Exelint “Securetouch+” Safety Huber Infusion Sets Audience: Hospital Risk Managers, Surgical Service personnel FDA notified healthcare professionals of a Class I recall of Exel/Exelint Huber needles, Exel/Exelint Huber Infusion Sets and Exel/Exelint “Securetouch+” Safety Huber Infusion Sets, manufactured by Nipro Medical Corporation for Exelint International Corporation due to […]

Through Thick and Thin

January 26, 2010

Mark and Sasha give us a peek into their lives as a couple dealing with Hemophilia, HIV and hepatitis C.聽 They discuss the importance of community and the value of support from people who understand.

340B Prime Vendor Program, managed by Apexus, and the Hemophilia Alliance announced today an innovative collaborative effort to assist participating federally funded hemophilia treatment centers.

January 14, 2010

IRVING, Texas/ Lansdale, Pa (January 14, 2010) – The 340B Prime Vendor Program, managed by Apexus, and聽 the Hemophilia Alliance announced today an innovative collaborative effort to assist participating federally funded hemophilia treatment centers in maximizing the benefits of 340B Drug Pricing Program and Prime Vendor Program discounts.聽 The two organizations are working together to […]

Octapharma Receives Orphan Drug Exclusivity Approval for wilate(R …

January 13, 2010

Octapharma Receives Orphan Drug Exclusivity Approval for wilate(R … FOXBusiness “Orphan drug exclusivity confirms Octapharma’s decision to focus exclusively on the treatment of von Willebrand patients. Wilate has a combination of two … Octapharma Receives Orphan Drug Exclusivity Approval for wilate(R … 聽 聽 聽

Bayer is now accepting internship applications for the 2010 Bayer Hemophilia Leadership Development Program

December 22, 2009

The Bayer Hemophilia Leadership Development Program was developed with input from several members of the hemophilia community who saw a need for a program to develop future leaders in the bleeding disorders community. With their support, Bayer HealthCare Pharmaceuticals created an eight-week, paid summer internship at Bayer HealthCare’s U.S. Headquarters in Wayne, New Jersey. During […]

TAKE ACTION TODAY

December 22, 2009

Amy Maeder is a mother of two teenagers with severe hemophilia.聽 Amy is very passionate about improving the lives of her sons and the bleeding disorders community.聽 Amy, along with HFA encourages you to TAKE ACTION! Call or write your person in congress TODAY!


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