Hemophilia Federation of America is a national nonprofit organization that assists, educates, and advocates for the bleeding disorders community.
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 […]
The following is an excerpt from a press release from CVS. Read the entire press release here. Company to provide funding to National Hemophilia Foundation, Hemophilia Federation of America and local organizations across U.S. CVS Health announced more than $260,000 in charitable commitments to local and national hemophilia and bleeding disorder programs across the country. The announcement […]
In the past few weeks, we have received many inquiries regarding the scope of the injunction Shire is seeking in its lawsuit against Genentech/Roche. Certain information has become public during this period that enables NHF and HFA to provide some limited guidance as to the scope of the injunction that Shire has requested from the […]
Click here for the combined issue statement from the Coalition for Hemophilia B, the Hemophilia Federation of America, the National Hemophilia Foundation and the Hemophilia Alliance supporting bi-partisan Alexander-Murray Legislation. (Full text available in pdf and below) People with Hemophilia and Other Bleeding Disorders Urge their Senators to Support Alexander-Murray Market Stabilization Legislation Senators Lamar Alexander […]
Bioverativ and a UK-based biotech company called Bicycle Therapeutics will work together to try to identify new therapies for hemophilia and also sickle cell disease. The research will focus on using a new approach – called Bicycles – which the companies hope will lead to a new way to treat the blood disorders. Read […]
Nearing the end of their 10-week internship, La’Brittinee and Paul got an opportunity to tour Grifol’s plasma collection center in Frederick, Maryland. Centers like this collect plasma from donors and then return the red blood cells to the donor in one sitting. The plasma, which undergoes several levels of strict testing, is then pooled and […]
The halfway point of our Policy and Government Relations Internship program is an excellent time for the interns to reflect on the first five weeks of their internship. La’Brittinee and Paul break down what an average week looks like for them as an HFA intern. Paul: After our first action packed week of the internship […]
Earlier this summer, we introduced you to La’Brittinee and Paul, our summer Policy interns. They have been busy all over DC, attending Congressional hearings and learning the ropes of working for a national organization. During their first week, they got to experience first-hand the planning and execution of our 4th Annual Patient Fly-In. Below are […]
Novo Nordisk recently announced that the U.S. Food and Drug Administration (FDA) has approved the Biologics License Application for REBINYN® (Coagulation Factor IX (Recombinant), GlycoPEGylated) for the treatment of adults and children with hemophilia B. Novo Nordisk expects to launch REBINYN® in the U.S. in the first half of 2018. For more info on REBINYN, […]
Each year, the HFA staff recognizes the national spirit and remarkable volunteerism for HFA with the #bleedingdisorders community. As #VolunteerAppreciationMonth comes to a close this week, we will be recognizing award winners from #HFA2017. Today, we remember Star Tyree, a long-time HFA supporter, volunteer, and friend. Starlyn (Star) Tyree was a former Executive Director […]
Today, on World Hemophilia Day, many pharmaceutical companies joined in the celebration by recognizing and supporting the hemophilia community. Linked below are statements from a wide group of companies on today’s celebration of World Hemophilia Day: Grifols Press Release Bioverativ Press Release Novo Nordisk on supporting women with bleeding disorders Shire Press Release CSL Behring […]
Bioverativ joins the global hemophilia community in recognizing World Hemophilia Day and supporting the millions of women and girls impacted by bleeding disorders through this year’s theme, “Hear Their Voices.” Excerpted from the press release: “Bioverativ shares the World Federation of Hemophilia’s commitment to understanding the needs of all members of the bleeding disorders community, including […]
As part of World Hemophilia Day celebrations, Grifols has announced a large donation of clotting factor to the World Federation of Hemophilia (WFH) Humanitarian Aid Program. This announcement is a continuation of the company’s three-year commitment from 2014, bringing the total humanitarian aid commitment to more than 200M IU of Factor VIII over eight years Read the […]
On April 11, Catalyst Biosciences, a clinical-stage biopharmaceutical company focused on developing novel medicines to address hematology indications, reached a key milestone towards starting human trials with completion of the CB 2679d/ISU304 toxicology studies. Their press release can be read in full here.
Aptevo’s Ixinity, previously approved for use in people over the age of 12, just received approval for use in children under 12, per their ongoing phase 3 trial. Read the full press release here.
Since my son Thomas was born thirteen years ago, I’ve come to think of the bleeding disorders community as family. Relatively speaking, that feeling came to us very quickly after meeting people in the community. My husband and I jumped right into attending events, volunteering, and generally asking questions of medical providers and anyone […]
By Sarah Shinkman Learning how to advocate is an important life skill at any age. Whether you are practicing personal, peer, or group advocacy, you have the power to influence decisions that may affect you and others. HFA’s final Young Adult Hangout of 2016 featured two community advocates and a health insurance overview by Erin […]
By Lori Long and Sarah Shinkman “Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has.” -Margaret Mead To find an example of the type of group Margaret Mead speaks about in her famous quote, look no further than our bleeding disorders community. […]
Intern Introspective Earlier this summer we welcomed our summer policy & government relations interns to our DC office. Eric and Cami are part of the bleeding disorders community and were chosen to participate in a 10-week internship because of their leadership qualities and interest in the field of policy and advocacy. Throughout the summer, Eric […]
Earlier this summer we welcomed our summer policy & government relations interns to our DC office. Eric and Cami are part of the bleeding disorders community and were chosen to participate in a 10-week internship because of their leadership qualities and interest in the field of policy and advocacy. Throughout the summer, Eric and Cami […]
Hemophilia Federation of America (HFA) recently earned a 4-star rating from Charity Navigator, the largest independent charity evaluator in the United States. Charity Navigator’s ratings system provides donors clear, objective, and reliable assessments of the financial health and accountability, and transparency of charities. Attaining a 4-star rating verifies that HFA exceeds industry standards and outperforms […]
The halfway point of our Policy and Government Relations Internship program is an excellent time to take stock of our interns’ first month or so. In this Intern Introspective, Cami and Eric break down what an average day in the life looks like as an HFA intern. ___________________________________________________________________________________________ 9 am to 10 am – Cami […]
During summer time, most parents feel they have some time before they have to think about an upcoming school year. However, if you are a parent of a child with hemophilia that just graduated from high school who is on his/her way to college, your worries start long before graduation. Our son Chris wanted to […]
It is important for individuals with bleeding disorders to participate in some form of physical activity. Being physically active helps to strengthen one’s muscles, bones and joints. One of the many benefits of having a strong healthy body can be a reduction in the number of bleeding episodes an individual might experience. Of equal importance […]
By Michelle Morath “Healthy Bodies Bleed Less” continues to be the mantra of HFA’s FitFactor program. It is our goal to get every community member at least considering the positive effects that physical activity and a healthy diet can have not only on their joint health, but also their overall health and sense of well-being. […]
My name is Rick Kelly, and my wife, Josie, I are the proud parents of Forrest. Forrest has a rare bleeding disorder called afibrinogenemia, or Factor I deficiency. This is the story of afibrinogenemia in three anecdotes that explain what afibrinogenemia is, the current state of treatment and its outlook for the future. In sharing […]
Ryan White died at the age of 18 on April 8, 1990. During the 1980s, Ryan bravely became a national spokesperson and symbol of hope for the hemophilia and HIV/AIDS community after being expelled from middle school due to community fears that the virus would spread to other children. Learn more about Ryan’s legacy by clicking […]
My first national bleeding disorder conference was in New Orleans in 1998. I was overwhelmed at the over 2,000 individuals in attendance. My son was two and the enormity of hemophilia hit me hard when I saw men in wheelchairs, using walkers, and not moving their limbs with ease. What in the world was really in […]
Being at a healthy weight is an important step for people with a bleeding disorder to take in order to maintain healthy joints. Eating a diet that includes a variety of clean, natural foods is a great way to get to or maintain a healthy weight. Following the MyPlate guidelines a healthy diet should include plenty […]
Patrick is a typical 12 year old who happens to have a rare bleeding disorder called, qualitative platelet disorder; the diagnosis is descriptive rather than specific – we have been told it is a one in a million condition and they do not know why his platelets do not function properly. We also don’t know […]
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