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Community Voices

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!

Any Port In A Storm

December 19, 2009

The Cleghorn family shares their story of having a young child with hemophilia.聽 They talk about prophylaxis treatment and transitioning from a portacath to to a vein.

HFA’s VOICES Campaign: VOICES from the Community

December 18, 2009

What do the Cleghorn’s, Laveane Lovelady, and Barry Haarde have in common?聽 Their stories are featured on HFA’s VOICES page.聽 The Cleghorn’s video clip highlights their son’s life from the very beginning.聽 Barry shares a story that many Blood Brothers could relate to.聽 Laveane talks about being diagnosed with mild Hemophilia A after the birth […]

Press Release: HFA Voices Blood Safety Concerns

December 11, 2009

FOR IMMEDIATE RELEASE:聽聽 December 10, 2009 Washington, DC: 聽The Hemophilia Federation of America (HFA) expresses its concern regarding the ongoing labor issues involving the Teamsters Local 929 and the American Red Cross of Pennsylvania /New Jersey. The national blood system depends on skilled workers to provide clean, safe blood to laboratories. The blood is distilled […]

Press Release: HFA Recently Approved for NORD Membership

December 10, 2009

FOR IMMEDIATE RELEASE:聽聽聽聽December 10, 2009 Washington, DC:聽 The National Organization for Rare Disorders (NORD) recently approved the Hemophilia Federation of America (HFA)for membership.聽 One of 150 member organizations, the HFA is excited about the opportunity to participate with NORD on important public policy, advocacy, awareness and educational issues.聽 Certain standards and requirements must be met […]

Community member Corey Dubin cited in the New York Times regarding blood plasma

December 9, 2009

Community Member Corey Dubin is cited in the NY Times regarding blood plasma

The WFH receives the largest humanitarian aid donation in its history

December 1, 2009

NEWS RELEASE: 聽聽Donation represents more than 40 million international units to the WFH 聽(Montreal, December 2, 2009): As part of its continued commitment to hemophilia care around the world, Wyeth, now a part of Pfizer, has pledged more than 聽40 million international units (IUs) of factor concentrates to the World Federation of Hemophilia (WFH). This […]

Barry, A True Blood Brother

December 1, 2009

Barry has hemophilia, HIV, and hepatitis C. 聽He discusses the realities of being diagnosed HIV positive as a teenager and the many challenges he has faced throughout his life. 聽Barry hopes by sharing his story he will empower others to share theirs.

Living With A Bleeding Disorder

November 21, 2009

Features: Terry Lamb, Karl Weixler, Tera Griffith & Tye Cowans.聽 These four individuals share what life is like being a part of the bleeding disorders community.


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