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Community Voices

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 […]

Rick

October 20, 2009

Download Rick’s Story By Rick, Jessie’s Dad My son Jesse was born on Valentine’s Day in 2001. He is now 4 years old and has severe hemophilia. It is hard to believe the amount of emotions that have transpired in the short period since his birth. Life leads us down many paths. The path of […]

Advocates in Action: The Forbes’ Family Meets President Obama

October 16, 2009

FOR IMMEDIATE RELEASE: October 16, 2009 Washington, DC:聽 聽Imagine having the opportunity to visit the Oval Office and meet the President of the United States.聽 This opportunity became a reality for 12-year old Emmanuel Forbes with severe hemophilia complicated by an inhibitor, his five siblings and parents, Michael and Jane Forbes. Emmanuel was granted his […]

Baxter Recognizes Outstanding Hemophilia Advocacy Initiatives

October 12, 2009

聽 It is with great pleasure that Baxter applauds the Partnership for Advocacy and Communications Training (PACT) Grant winners. Run by the Hemophilia Association of New Jersey (HANJ) and supported through a grant from Baxter, the PACT Grant Program provides financial assistance to support a wide range of advocacy programs from the bleeding disorders community. […]

Heparin: Change in Reference Standard

October 1, 2009

FDA MedWatch Heparin: Change in Reference Standard – The change will result in 10% reduction in the potency of the heparin marketed in the U.S. Audience: Pharmacists, physicians, hospital risk managers and consumers FDA notified healthcare professionals and patients of a change to heparin, effective October 1, 2009, which will include a new reference standard […]

NORD Press Release

October 1, 2009

聽Danbury, CT. —– The leading advocacy groups for Americans and Europeans with rare diseases鈥攖he National Organization for Rare Disorders (NORD) and the European Organization for Rare Diseases (EURORDIS)鈥攈ave signed a Memorandum of Understanding to join forces on several key strategic initiatives on behalf of rare disease patients and their families.聽 The intent is to increase […]

Wyeth Announces Recipients of the Soozie Courter “Sharing a Brighter Tomorrow” Hemophilia Scholarship Program

October 1, 2009

聽 Program Marks Continued Commitment to Education and Assistance to Hemophilia Community聽(Click Here for Announcement) 聽Collegeville, Pa., September 29, 2009 division of Wyeth (NYSE:WYE), today announced the recipients of the Soozie Courter “Sharing a Brighter Tomorrow” Hemophilia Scholarship Program for the 2009 assistance for higher education to individuals with hemophilia. Since 2002, Wyeth has donated […]

BioRx and Bayer Healthcare Offer Free

September 28, 2009

Cincinnati, Ohio (September 28, 2009) (Click Here for PDF)鈥 Bayer HealthCare and BioRx, a specialty pharmaceutical company, announce the availability of Quest for Infusion: Nate Goes to Camp, a new children’s book about hemophilia. 聽Quest for Infusion: Nate Goes to Camp, written by Chris Perretti Barnes and illustrated by Michael Graham, is the story of […]

HFA Press Release: HFA MEETS GOAL OF 1,000 FANS ON OFFICIAL FACEBOOK PAGE!

September 28, 2009

FOR IMMEDIATE RELEASE: 聽 聽September 28, 2009 聽Washington, DC:聽 The Hemophilia Federation of America (HFA) launched its first online community social networking medium in July 2009.聽 HFA’s official Facebook site is designed to make connections and build relationships with community members across the country. On September 19, 2009, just two months after the page was […]

PPTA LAUNCHES NEW WEBSITE TOOL

September 28, 2009

FOR IMMEDIATE RELEASE 聽September 23, 2009 聽Contact: Kara Flynn 聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽 Kym H. Kilbourne (443) 458-4669 聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽 (443) 458-4682 (443) 370-1177 (cellular) 聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽 (443) 995-2102 (cellular) kflynn@pptaglobal.org聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽 kkilbourne@pptaglobal.org PPTA LAUNCHES NEW WEBSITE TOOL聽(Click Here for PDF) Enhancement to help potential plasma donors find plasma centers 聽ANNAPOLIS, MD (September 23, 2009) – Visitors to DonatingPlasma.org can more […]

HFA Press Release: HFA COLLABORATES WITH COTT OFFERING TRAVEL SCHOLARSHIPS TO SURVIVORS’ REUNION-CSL Behring offers $10,000 in support of the scholarships

September 23, 2009

FOR IMMEDIATE RELEASE: September 21, 2009 聽The Hemophilia Federation of America (HFA) will collaborate with the Committee of Ten Thousand (COTT) by offering a total of 33 travel scholarships for members of the Blood Brotherhood Program to attend COTT’s twentieth anniversary celebration and survivors’ reunion.聽 The celebration will be held at the Liaison Hotel in […]

HFA Press Release: HFA COLLABORATES WITH COTT OFFERING TRAVEL SCHOLARSHIPS TO SURVIVORS’ REUNION-Baxter offers $15,000 in support of scholarships

September 23, 2009

FOR IMMEDIATE RELEASE: September 21, 2009 聽The Hemophilia Federation of America (HFA) will collaborate with the Committee of Ten Thousand (COTT) by offering a total of 33 travel scholarships for members of the Blood Brotherhood Program to attend COTT’s twentieth anniversary celebration and survivors’ reunion.聽 The celebration will be held at the Liaison Hotel in […]

Community members take action to self-advocate and petition FDA for change!

September 9, 2009

Theresa Toigo, RPh, MBA Director Office of Special Health Issues Food and Drug Administration (FDA) 5600 Fishers Lane HF-12, Room 9-49 Rockville, MD 20857 Theresa.Toigo@fda.hhs.gov 聽 Dear Ms. Toigo, 聽 We are people with Hemophilia and their supporters. 聽 We recognize and appreciate the recent FDA publication of rules to clarify and expand the process […]

PRESS RELEASE: HFA WELCOMES NEW INTERN Amanda Winchester

September 8, 2009

FOR IMMEDIATE RELEASE: September 8, 2009 Washington, DC – Effective August 24, 2009 the Hemophilia Federation of America (HFA) is pleased to announce the addition of Amanda Winchester, Intern.聽聽 Ms. Winchester’s primary responsibility is Helping Hands Coordinator. Helping Hands is a program for individuals with hemophilia and von Willebrand disease that provides emergent financial relief […]

PRESS RELEASE: HFA AWARDED CDC COOPERATIVE AGREEMENT FOR FIT FACTOR PROGRAM

September 7, 2009

FOR IMMEDIATE RELEASE: September 1, 2009 The Hemophilia Federation of America (HFA), a national nonprofit headquartered in Washington, DC, has been awarded a five-year cooperative agreement from the Centers for Disease Control and Prevention (CDC).聽 The award supports a program aimed at promoting physical activity and maintaining a healthy weight in individuals with hemophilia. 聽Proper […]


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