Hemophilia Federation of America is a national nonprofit organization that assists, educates and advocates for the bleeding disorders community.
Hello, my name is Lupe Torres! I would like to start by thanking everyone for the opportunity to let me share my experience with the 504 plans. First, here is a little bit about me and my family. I live in the city of Las Vegas, and I have three children, two sons and one […]
The following is sourced from BioMarin. Read the update in its entirety “BioMarin Hemophilia A Clinical聽Development Program: An Update for the Hemophilia Community” View PDF | Download PDF BioMarin Hemophilia A Clinical Development Program: An Update for the Hemophilia Community BioMarin is pleased to update the community regarding our ongoing gene therapy clinical trial program […]
Read original news release from the National Institutes of Health: U.S. Blood Donations are Safe Under Current COVID-19 Screening Guidelines A new study by researchers at the National Institutes of Health and their colleagues has found that SARS-CoV-2, the virus that causes COVID-19, does not appear to pose a threat to the safety of the […]
Dear Addy, I heard that a new law was passed that may lower my costs for health insurance. How can I learn more? Sincerely, Frugal Fran
Read the full press release from CSL Behring here. Global biotherapeutics leader CSL Behring 聽announced the closing of its global Commercialization and License agreement with uniQure for etranacogene dezaparvovec, a novel gene therapy for the treatment of hemophilia B. Etranacogene dezaparvovec is currently in Phase 3 clinical trials and has been shown聽 to result in […]
Read the original press release here uniQure, a leading gene therapy company advancing transformative therapies for patients with severe medical needs, announced that the waiting period under the Hart-Scott-Rodino Antitrust Improvements Act of 1976 for the global licensing agreement with CSL Behring for etranacogene dezaparvovec, an investigational gene therapy for patients with hemophilia B, expired […]
Hemophilia Federation of America is pleased to announce an upcoming event, Dateline Live: Navigating Approved Products and Emerging Therapies. Save the Date! This four-day, online event will take place from June 23-25, 2021 and will help patients and caregivers with daunting responsibility of navigating available treatment options and emerging therapies.聽 Annually, we鈥檝e compiled a comprehensive […]
In early 2021, Hemophilia Federation of America surveyed members of the bleeding disorders community to gauge their response to the COVID-19 vaccine. The survey was conducted from January 22 to March 15, 2021. For the first half of this time frame, the Pfizer and Moderna vaccines were being administered; for the second half, the Johnson […]
HFA through the Bleeding Disorders Health Disparities Council (BDHDC) is launching a survey that will help to inform the organization, community and other key stakeholders about the existence and impact of health disparities and inequities within bleeding disorders. The survey will provide HFA with a greater understanding of health equity, diversity and inclusion, and it […]
The 2021 application period is now closed. Decisions will be announced in June 2021. Could you use $1000 gain a skill or certification to help you get a job? Are you an adult (age 18 – 64) with a bleeding disorder? You may be eligible for an HFA Job Readiness Grant! From bookkeeping to blogging, […]
I know this is what we raise our children for 鈥 for them to leave the nest and fly on their own 鈥 I just never knew it was going to be so hard when it actually happened. My son, Nick, who is almost 18, started a Monday, Wednesday, Friday routine of prophylaxis when he […]
Hemophilia Federation of America condemns and denounces all acts of racism, xenophobia and intolerance against the Asian American and Pacific Islander community. We stand with our AAPI community against the alarming rise in violence they have endured. HFA remains committed to promoting racial and social equity, standing up for our AAPI staff and community members, […]
As the nation continues to navigate concerns with travel, safety and vaccinations with COVID-19, Hemophilia Federation of America announces its annual patient-centered education Symposium will be hosted virtually again in 2021. Originally set to take place in San Antonio in October of 2021, the annual conference is being reimagined for a virtual event, and dates […]
During Black History Month, Hemophilia Federation of American would like to shine a light on Black healing and mental health in the bleeding disorders community. In addition to the emotional impacts of chronic illness and living in a pandemic, Black community members may also be experiencing layers of individual and intergenerational trauma from racism. There […]
Hemophilia Federation of America is excited to now offer video responses to Dear Addy questions. While the United States grapples with issues of聽diversity, equity and inclusion, and improvements have been made throughout the country, a community member inquired what HFA is doing to address diversity, equity and inclusion. Senior Manager of Policy and Advocacy, Kimberly […]
In the spring of 2020, the usual way of life for the entire nation changed when the COVID-19 pandemic hit the United States. While Hemophilia Federation of America quickly responded by providing resources and information to the bleeding disorders community, the organization also wanted to better understand how the community was affected. HFA conducted an […]
“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. From the 1990s with the passage […]
Hola a todas las lindas mamas de este blog, mi nombre es Lupe Torres, vivo en la ciudad de Las Vegas, NV. Soy mam谩 de tres hermosos hijos. Tengo una hija de 23 a帽os, un var贸n de 24 y mi m谩s peque帽o de 18 a帽os. Mi hija Michelle de 23 a帽os fue diagnosticada con VWD […]
The English version of this Infusing Love: A Mom’s View blog can be found below.聽 En Puerto rico se celebra el D铆a de Acci贸n de Gracias (Thanksgiving) al igual que en los Estados Unidos continentales. La verdad es que todos los d铆as festivos federales se celebran, pero 茅ste lo hemos 鈥渃riollizado鈥 en gran medida. […]
Dear Addy, I am a Medicare beneficiary weighing my plan options for 2020. What do I need to know about choosing a plan for the coming year? Medicare Beneficiary Dear Beneficiary, Every year Medicare open enrollment runs from Oct. 15 through Dec. 7. This is the time of year when you can decide to stay […]
HFA and NHF are pleased to share a brief update with the community concerning a recent meeting we had with the FDA as well as a number of additional resources that the FDA provided after the call.聽 HFA and NHF will continue to update the bleeding disorders community as any further information develops. Please note […]
My mother was called a 鈥渂leeder鈥 when I was growing up. I remember she almost died from a hemorrhage after surgery and her nose constantly needed to be packed at the emergency room due to nose bleeds. I never bled like her and never considered I might have something too. I went 36 years […]
Dear Addy, I鈥檝e seen HFA post on social media about changes to the public charge rule. What are the changes and how could they affect the bleeding disorders community? Signed, Concerned Advocate Dear Advocate, Para obtener informaci贸n en espa帽ol, haga clic aqu铆. Thanks for reaching out about this important and developing issue. As you may […]
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鈥檚 Policy and Government Relations Internship has come to a close for 2019. Last week, Jasmin shared her thoughts on the summer and this week we hear from Dylan. HFA is very grateful for all of the work Jasmin and Dylan have completed in 10 short weeks. We can鈥檛 wait to see […]
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 […]
The midway point of our Policy and Government Relations Internship is an excellent time for Jasmin and Dylan to reflect on the first five weeks of their internship. In this blog post, they break down what an average week looks like for them as HFA interns and what the rest of the summer holds. Jasmin: […]
Dear Addy, I recently saw HFA post on Facebook about an advocacy day on Capitol Hill. I wasn鈥檛 able to participate on the day of the event; can I still get involved? Signed, Advocacy Amplified Dear Advocacy, Yes! The posts you saw were in conjunction with HFA鈥檚 annual Patient Fly-in and Virtual Hill Day on […]
Featured Story: Some relief ahead from accumulator adjusters. Finally some good news regarding accumulator adjusters! Patient advocates, including HFA, have been warning lawmakers that accumulator adjuster programs threaten access to care for people with chronic health conditions. In recent weeks, state and federal lawmakers signaled they have heard this message and took steps to rein […]
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