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HFA News

Press Release: HFA Recognizes Rare Disease Day

February 28, 2012

Link to PDF of Rare Disease Day Press Release Hemophilia Federation of America Recognizes Rare Disease Day February 29th, 2012 Marks the Fifth International Rare Disease Day Washington, D.C. – The Hemophilia Federation of America (HFA) will join the National Organization for Rare Disorders (NORD), and others around the world in observing Rare Disease Day […]

Forbes: The 10 Most Expensive Common Medical Conditions

February 25, 2012

Over the course of a year two out of every 1,000 people will rack up $100,000 or more in medical bills. These are the 鈥渉igh cost patients鈥 who make insurance premiums go up and bedevil policy makers. These are people who are really sick. The conventional wisdom is that with better prevention, wellness, care-coordination, insurance […]

HFA Receives $7,250 United Way Grant

February 16, 2012

Official Press Release Funding Will Help Support FitFactor Initiatives Washington, D.C. – The Hemophilia Federation of America (HFA) today announced that the United Way of The National Capital Area has issued a $7,250 grant to help support their FitFactor program in collaboration with one of their local member affiliate chapters, the Hemophilia Foundation of Maryland […]

HFA Press Release: New Staff

February 9, 2012

Link to PDF of New Staff Press Release HFA Office Welcomes New Additions to Staff Washington, D.C. – The Hemophilia Federation of America (HFA), is pleased to announce four new additions to their staff: Jane Cavanaugh Smith, Matthew Landseadel, Pat Brown, and Richard Pezzillo. “Despite the difficult economy, HFA continues to grow and build as […]

Rare Disease Day

February 8, 2012

Celebrate Rare Disease Day on February 29th 2012! HFA is a proud partner of NORD, the National Organization for Rare Disorders.

TX Bleeding Disorders Advisory

December 5, 2011

HFA Board Member Lew Collins has been appointed to the Texas State Bleeding Disorders Advisory Council. According to the Texas Department of State Health Services (DSHS) this advisory council will oversee: 1) public use data, outcome data, and other information submitted to or collected by DSHS related to hemophilia or other bleeding or clotting disorders; […]

World AIDS Day

December 1, 2011

Today, December 1 is observed as World Aids Day. Established in 1988 by the World Health Organization, this day is established to ensure renewed and continual attention to the threat posed by HIV-AIDS. It is estimated by the Centers for Disease and Control that over 1 million people in the United States are currently living […]

Access to HCV Therapy

November 29, 2011

Next Push – Advanced Therapy Our Citizen Petition to the FDA in 2009 (with amendment), asked for recognition of the HCV crisis in our community and it requested the earliest possible access to advanced HCV therapies.聽 We have made substantial progress in moving regulatory policy toward appropriate urgency. However, as advocates and patients, we are […]

Get Out & Go: Partner of Gears for Good

November 28, 2011

Gears For Good Fall Newsletter

HFA Receives Multi-year Cooperative Agreement from CDC

October 5, 2011

FOR IMMEDIATE RELEASE: Tuesday, October 4, 2011 聽HFA Receives Multi-year Cooperative Agreement from CDC Washington, DC: Hemophilia Federation of America (HFA), a national nonprofit headquartered in Washington, DC is pleased to announce the award of a three year Cooperative Agreement from the Centers for Disease and Control (CDC), 聽CDC-RFA-DD11-1103 (Module-A): Public Health Surveillance for the […]

HFA Press Release: Inaugural Bike Ride

August 22, 2011

FOR IMMEDIATE RELEASE: August 16, 2011 Hemophilia Federation of America launches Inaugural Bike Ride Washington DC:聽 The Hemophilia Federation of America (HFA) launches inaugural bike ride, “Gears for Good”, September 15 – 17, 2011.聽 A three day 156 mile ride departing West Virginia and ends in Washington, DC, promoting health and wellness for individuals with […]

Changes to the PCIP program

June 2, 2011

From the National Health Law Program (NHELP) www.healthlaw.org     This week, the U.S. Department of Health and Human Services (HHS) announced that premiums for the Pre-Existing Condition Insurance Plan (PCIP) will drop as much as 40 percent in 18 states, and eligibility standards will be eased in 23 states and D.C., beginning July 1, […]

BPAC Holds Spring Meeting

May 27, 2011

The Blood Products Advisory Committee (BPAC) 聽to the Food and Drug Administration (FDA) 聽held their spring meeting on April 28-29, 2011 in Washington DC. This meeting addressed three topics: (1)Testing Source Plasma for Hepatitis B Virus by Nucleic Acid Testing; (2) Current Considerations on the Use of Plasma Obtained from Whole Blood Donors for Further […]

People with Bleeding Disorders and HCV send letter to FDA Commissioner

May 25, 2011

HFA recognizes and supports efforts to further the development and availability of promising HCV therapies for the bleeding disorders community. Click here to read the recent letter to FDA Commissioner, Dr. Margaret Hamburg. Click here to read the MASAC Recommendations for Treatment of Chronic HCV Infection.

2011 Symposium Video

May 16, 2011

HFA Symposium 2010

March 3, 2011

Rare Disease Day 2011

January 26, 2011

Finding Independence in the Trees, A Peak Inside a Week at Summer Camp

January 15, 2011

By Katie Whittle I believe we all could use a bit more positivity in our life, a break from the daily grind and a chance to let lose. One week a summer, I pull out my grungy clothes and put away my somewhat serious self for an unforgettable week of summer camp.聽 I just returned […]

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 […]

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 […]

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, […]

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.

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 […]

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 […]

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 […]

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 […]


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