Hemophilia Federation of America is a national nonprofit organization that assists, educates and advocates for the bleeding disorders community.
We’re excited to announce Hemophilia Federation of America President and CEO, Sharon Meyers, will be a presenter in an upcoming webinar with the National Organization for Rare Disorders. Fundraising is one of the top priorities of our member organizations, and as such, we are bringing expert speakers to discuss guidelines for relationship building and engaging […]
SYMPOSIUM 2020 HAS BEEN POSTPONED鈥擱EAD THE ANNOUNCEMENT HERE As the nation responds to an outbreak of a respiratory illness caused by a novel coronavirus (COVID-19), HFA is closely monitoring the situation and evaluating steps that need to be taken to best prepare to host its upcoming annual patient Symposium on April 23-25, 2020 in Baltimore, […]
Hemophilia Federation of America is excited to bring inspirational speaker, Lindsay Vos of Brownstown, Mich., to Baltimore as our keynote speaker for 2020 Symposium. Vos鈥檚 story began when she spent most of her life suffering from migraines and eventually experiencing left-sided weakness and slurred speech. But doctors dismissed her symptoms as anxiety whenever she sought […]
Hemophilia Federation of America is aware of a drastic increase in social media targeting members of the bleeding disorders community on a number of initiatives. Wanting the best for the community, HFA encourages the community to be vigilant and cautious when interacting on social media platforms. While HFA respects the rights of each individual to […]
This fall Hemophilia Federation of America kicked off Your Journey to Healthier Joints with six member organizations fielding teams of up to 10 men with bleeding disorders to participate in an eight-week activity challenge. The challenge was part of HFA鈥檚 cooperative agreement with the Centers for Disease Control and Prevention to promote joint health in […]
WASHINGTON, D.C. 鈥 Hemophilia Federation of America announced the board of directors has selected Sharon Meyers, M.S., CFRE, as president and chief executive officer, effective Jan. 16, 2020. Meyers is a strategic, energetic, action-oriented nonprofit leader who has been part of HFA鈥檚 leadership team for more than four years, most recently serving as the vice […]
Meet Orlando Vives | Team聽Asociaci贸n Puertorrique帽a de Hemofilia My name is Orlando Vives and I am a member of the Asociaci贸n Puertorrique帽a de Hemofilia. When starting out the challenge I honestly thought I would need to step up how much exercise I did in a day, but I was rather surprised to find the amount […]
Meet Eduardo Rodriguez | Team Asociaci贸n Puertorrique帽a de Hemofilia I鈥檓 the public relations coordinator for Asociaci贸n Puertorrique帽a de Hemofilia and part of the APH team for HFA鈥檚 Journey to Healthier joints challenge. As a von Willebrand patient I have never had any serious issues besides one of my knees. For that reason and also my […]
Meet John Faria | Team Captain | Team Oklahoma Hemophilia Foundation My name is John Faria and I am a big fan and proponent of HFA and the Blood Brotherhood program! I鈥檝e had the pleasure of being Oklahoma Hemophilia Foundation鈥檚 Men鈥檚 Committee Lead until this past November, where I am hanging up the reigns after […]
Meet Matthew Tach茅 | Team Hemophilia Foundation of Oregon We are pleased to feature our member organization, Hemophilia Foundation of Oregon, a participant in Your Journey to Healthier Joints Activity Challenge. In this video, HFO team member, Matthew Tach茅, tells us about the workout routine he uses to strengthen his joints and reduce bleeds. […]
Meet Kevin Finkle | Team聽Bleeders of the Great Northwest Kevin is the team leader for Bleeders of the Great Northwest. He shares the unique way he gets exercise:聽鈥淗ere is a video of me getting exercise while practicing with my African marimba band, White Rhino Marimba.聽Exercise doesn’t have to happen in a gym, it is important […]
Meet Tim Wicks | Team Hemophilia Foundation of Michigan I am the Director of Camp Bold Eagle and the Youth Services Manager at the Hemophilia Foundation of Michigan. I also have severe hemophilia A and am on the HFM team for HFA’s Journey to Healthier Joints challenge. I was doing really well with getting my […]
Recently there has been a lot of news related to the safety of the bleeding disorders community. HFA & NHF are working together to address the issues important to patients. Please read for further information on how you can provide your thoughts and concerns and to learn more about our plans for moving forward.
Sept. 3, 2019 After the recent resignation of long-time President and CEO, Kimberly Haugstad, Hemophilia Federation of America has named its Vice President of Advancement, Sharon Meyers, as interim President and CEO. Meyers, who began her role on Sept. 1, brings a wealth of experience to the position while HFA鈥檚 board of directors finds a […]
Hemophilia Federation of America has received a Eugene Washington PCORI Engagement Award from the Patient-Centered Outcomes Research Institute for its FIRST (Females in Research Sharing and Translation) Project to improve opportunities for women to be engaged in patient-centered research. The capacity-building grant will support HFA鈥檚 FIRST Project which will begin by identifying how women are […]
Dear Bleeding Disorders Community 鈥 I want to let you know that I will be stepping down from HFA as your President and CEO at the end of August. Leaving HFA has been an incredibly difficult decision I have been wrestling with for about a year.聽 I love HFA but ultimately this is just the […]
Hemophilia Federation of America is committed to transparency, a fact recently recognized when the organization received a four-star rating by Charity Navigator and a Platinum Seal of Transparency by GuideStar, two respected nonprofit watchdogs. With an annual operating budget of more than $6 million, HFA relies on a diversity of funding sources and is […]
Download this Press Release here. FOR IMMEDIATE RELEASE March 15, 2019 Hemophilia Federation of America Recognizes Bleeding Disorders Awareness Month Monthlong Activities Raise Public Awareness for Bleeding Disorders Washington, D.C.聽鈥 More than 30 years ago, President Ronald Regan designated the month of March as Hemophilia Awareness Month to bring awareness and attention to those living […]
Even if you鈥檝e been feeling okay, the end of the year can bring mental health challenges for anyone of any age.聽 It鈥檚 no coincidence that in much of the United States the winter months can be some of the darkest, longest and coldest. The way many people cope is to celebrate the traditions of […]
November, is National Caregivers Month. It鈥檚 the one day a year, set aside to acknowledge those who volunteer to care for family members, friends and neighbors who are managing health challenges and other disabilities. Not all superheroes wear capes. Some are managing medications, organizing medical records, scheduling doctor鈥檚 appointments and some superheroes are just […]
You have decided to take the first step toward mental health care, but how do you get started? Luckily you have options and many people around who are eager to help. Most times, the initial step of reaching out are with the individuals and groups that you most trust, such as family, friends, physician, […]
Hemophilia Federation of America will recognize 25 years serving the bleeding disorders community in 2019 with plans to display historical records at its annual symposium in San Diego. The Washington, D.C.-based organization is currently collecting archival-type material, such as vintage medical equipment, supplies, rally posters, journals, diaries, newsletters, documents, photographs and other items representing the […]
Healthy living is beneficial for the physical body, but it can also benefit our mental health. Proper wellness, combined with safe and effective exercise are particularly important for individuals living with bleeding disorders. The National Alliance on Mental Illness reminds us that mental health is a vital part of our overall health. Focusing on our […]
The field of gene therapy is a hot topic of discussion. With multiple clinical trials ongoing, people with hemophilia are at the forefront of gene therapy research. Has anyone ever asked you about your thoughts and opinions about gene therapy? Here鈥檚 your chance to make them known! Hemophilia Federation of America Research is asking people […]
HFA鈥檚 Research Team gave and received early an holiday gift this year: knowledge. We attended the 59th annual meeting of the American Society of Hematology (ASH) in Atlanta, Georgia, December 9-12. The unofficial song of the meeting was 鈥淟et it Snow鈥 as that (along with the once standing Georgia Dome) is what was on the […]
The Hemophilia Memorial in the National AIDS Memorial Grove in San Francisco, CA, will be a place where we can remember the people in our community who lost their lives to AIDS. This will be a place of remembrance, healing, and hope. The founding partners of the Hemophilia Memorial, HFA, the National Hemophilia Foundation, and […]
How did the Hemophilia Memorial at the National AIDS Memorial Grove come to be? In 2016, National AIDS Memorial Grove reached out asking for support for their 鈥淪urviving Voices鈥 project. This is a multi-year oral history project meant to ensure that stories and lessons of the AIDS epidemic are captured, curated, and retained for […]
The Terry Lamb Health and Wellness Award is award is for exceptional commitment to supporting HFA in its national efforts to encourage health, nutrition and wellness behaviors in the bleeding disorders community. Terry Lamb had severe hemophilia, was an active member of the bleeding disorder community, and was a respected leader. Terry grew up in […]
Each year, at the HFA Symposium, we recognize the tremendous volunteerism in the bleeding disorders community. The Michael Davon Community Service award is for extraordinary service to the community via one鈥檚 national or global volunteerism and charitable giving. Michael Davon was a New Englander who was integral to the inception of HFA. He was described […]
Rose Bender is a 20-year old sophomore at Yale University living with severe hemophilia A. She was 9 months old when her family first heard about hemophilia. Her bleeding at the time was so severe that she needed a whole blood transfusion, cryoprecipitate, and fresh frozen plasma just to stay alive. Volunteering and giving back […]
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