Donate

Community Voices

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.

1st Person with Hemophilia Reaches Mt. Rainier Summit to Raise Money for Inner-city Youth and International Bleeding Disorder Assistance Jeff Salantai

November 10, 2009

News Release Cincinnati, Ohio (November 9, 2009) 鈥 聽 On August 5, 2009, two BioRx employees, Jeff Salantai and Eric Hill, began hiking to the summit of Mt. Rainier.聽 They successfully reached the 14,410-foot summit on August 6.聽聽 Hill says, “We hoped to reach one of the largest peaks in the U.S., and we achieved […]

Posted: 11/6/2009

November 6, 2009

Guidance for Industry: Use of Nucleic Acid Tests to Reduce the Risk of Transmission of West Nile Virus from Donors of Whole Blood and Blood Components Intended for Transfusion聽(PDF – 68KB)

Community Member, Barbara Dittrich one of 3 semi-finalist for the The Hope Award

October 27, 2009

The Hemophilia Federation of America congratulates and applauds the good works of 聽Barbara Dittrich, Executive Director of聽Snappin’Ministries for becoming one of 3 semi-finalist for the The Hope Award. Barbara started the support group when her son Charlie was born in 2002 with Hempohilia. We wish her all the best with her ministry and look forward […]

Derick Stace-Naughton

October 22, 2009

Derick Stace-Naughton, a young man with von Willebrand’s Disease, started the group “Students for the Awareness of Bleeding Disorders.” 聽Derick wants YOU to urge your member of congress to co-sponsor H.Con Res.147. 聽H.Con.Res.147 promotes screening for vWD.

Derick Stace-Naughton

October 22, 2009

[vimeo]http://vimeo.com/7055318[/vimeo] Derick Stace-Naughton, a young man with von Willebrand’s Disease, started the group “Students for the Awareness of Bleeding Disorders.” 聽Derick wants YOU to urge your member of congress to co-sponsor H.Con Res.147. 聽H.Con.Res.147 promotes screening for vWD.

Press Release: HFA HOSTS FIRST ADVOCACY INTENSIVE

October 21, 2009

FOR IMMEDIATE RELEASE:聽聽聽聽 October 20, 2009 聽Washington, DC:聽 The Hemophilia Federation of America (HFA) held its first Advocacy Intensive weekend October 2 – 5, 2009.聽 The program is a best practice model for bringing HFA social advocacy programs full circle and encouraging members of the bleeding disorders community to reach their聽 full potential through role […]

John

October 20, 2009

“One Man’s Story” By John Jarratt, M. Ed., L.P.C. Download John’s Story It is my hope that the new millennium will bring about a better understanding of hemophilia and bleeding disorders, along with an improved relationship and collaboration with consumers, chapters, foundations, hemophilia treatment centers, clinics, private practitioners, emergency room personnel, national organizations, and industry. […]

Barry

October 20, 2009

The Long Mile by Barry Haarde Download Barry’s Story There was only one more hill to climb as I rounded the corner that brought the finish line into view. I had ridden my bicycle 175 miles since lining up at the starting point back in Houston the day before. After more than 10 hours on […]


Sign up for E-mails, Dateline Magazine, and other ways to stay connected.