Hemophilia Federation of America is a national nonprofit organization that assists, educates and advocates for the bleeding disorders community.
A visit to an unfamiliar hospital reminds patient of the importance of self-advocacy BY MICHAEL BISHOP, STAFF WRITER Self-advocacy is the quintessential and necessary skill for people with hemophilia. It鈥檚 something I鈥檝e been taught my entire life, and it鈥檚 something on which Hemophilia Federation of America frequently focuses its education. It鈥檚 incredibly important, and I鈥檝e […]
BY SHAWN NEASE, GUEST WRITER You have got to be kidding me! Are you sure that is just for this year?鈥 That was me after wrapping up this year鈥檚 Delves for Donors fundraising event and checking in with the hosting store owner for a rough total of how much was raised this year. A little […]
Hemophilia Federation of America has welcomed two advocacy interns for the summer of 2020, but in a new and unique way. For many years, HFA鈥檚 advocacy interns spent 10 weeks of their summer living in Washington, D.C., where the HFA office is located, engaged in hands-on activities related to policy and advocacy. But with travel […]
HFA board member shares valuable tips to accomplish more BY CLYDE J.R. BRAWNER, MBA, HFA BOARD OF DIRECTORS Goal setting is often the foundation of success. We set goals for our education, our finances, our health, our careers plus many other important milestones in our lives. We often think about accomplishing our goals, rarely understanding […]
BY EMILY ROUSH-BOBOLZ, STAFF WRITER When a pandemic hit the United States in early 2020, no one knew what to expect. Schools and businesses began to close, and people were being laid off from their jobs, but it wasn鈥檛 yet clear how the bleeding disorders community would be directly impacted. It was clear, however, that […]
Hemophilia Federation of America quickly responded to the needs of the bleeding disorders community during the coronavirus pandemic by creating a hub of valuable information at www.hemophiliafed.org/covid19. HFA鈥檚 COVID-19 Hub includes: Patient Care and Product Availability For patients and families concerned about access to care and the availability of bleeding disorders products and services during […]
Hemophilia Federation of America created Project CALLS to collect data and personal stories of how techniques employed by insurance companies create barriers to care for patients. In 2020, HFA will highlight stories of CALLS respondents. In addition to highlighting their stories, the data collected from more than 200 submissions since 2015 offers a baseline view […]
A Summary of HFA鈥檚 Blood Brotherhood & Families Inhibitor Survey Data BY DEBRAN TARVER, STAFF WRITER Many people with hemophilia A or B or type 3 von Willebrand disease (vWD) treat by infusing clotting factor concentrates into their veins, which helps form clots, and stop or prevent bleeding episodes. Of those who infuse with clotting […]
Hemophilia organization hopes to change current Medicare reimbursement that leads aging hemophilia patients struggling to enter nursing facilities BY SONJI WILKES, STAFF WRITER During National Hemophilia Foundation鈥檚 Washington Days, NHF announced The Hemophilia Skilled Nursing Facility Access Act had been introduced in both the House and the Senate. This critical legislation will rectify a longstanding […]
Nationally-known cycling event creates amazing memories for Team Resilience participants By: Emily Roush-Bobolz,聽Staff Writer While Hemophilia Federation of American has been hosting the Gears for Good National Ride from West Virginia to Washington, D.C., for eight years, the organization had a larger vision 鈥 use existing athletic and competitive events around the country to raise […]
Por: Andy Anderson y Martha Boria, escritores del personal 鈥淎hora eres una mujer鈥. 鈥淎qu铆 est谩n las toallas higi茅nicas鈥. 鈥淧uedes sostener una toalla de agua caliente en el est贸mago por los dolores鈥. 驴Suena esto familiar? Para muchos de nosotros, hablar de per铆odos era solo algo que pod铆amos hacer con mam谩. No lo discutimos en la escuela […]
By: Kimberly Ramseur, Staff Writer With all the talk about health care financing, it is easy to get confused and overwhelmed with all the information being disseminated. If an individual falls under one of the following, he or she may be eligible for Medicare, a national health insurance program administered by the Center for Medicare […]
Advocacy Leadership Council member shares her experience at HFA鈥檚 2019 Patient Fly-In By: Natalie Parker, Guest Writer I was nervous before walking into a Congressional office. The U.S. Capitol is huge! I didn鈥檛 know what to expect and I wasn鈥檛 sure they would listen to me. After all, legislators and their staff meet with numerous […]
It is important to pay attention when a product is recalled, but with all the different sources of information, and the different types of recalls, it can be confusing. Recalls, designed to protect the public鈥檚 health, are used as a way to deliver information to consumers in an expeditious manner. A recall is an action […]
Dear Friends, For nearly 11 years Hemophilia Federation of America has had the same leadership guiding and taking the organization where the community has requested. Throughout this time, HFA has grown by leaps and bounds, not only in the size of the organization, but more importantly in what we are able to offer the community […]
By: Christopher Quesenberry Having a rare condition like hemophilia has never held me back from pursuing an active lifestyle. The demands of maintaining a high level of activity, however, ultimately resulted in joint failure. My right knee has been considered a 鈥渢arget joint鈥 since I was in the fifth grade. By the time I reached […]
Note:聽This article is for educational purposes only and is not intended to be construed as direct medical advice or the official opinion/position of HFA, its staff, or its Board of Directors. Readers are strongly encouraged to discuss their own medical treatment with their healthcare providers. Pain is a serious medical concern in our country. Approximately […]
By Elaine Chan, MSW, MPH At any point, families living with a bleeding disorder can experience financial hardship because of their medical situation. HFA鈥檚 Helping Hands Program has become a safety net for thousands of families throughout the years. Helping Hands has provided many families with assistance for expenses like housing, utilities, and transportation. In […]
Erik von Willebrand, a Finnish physician, noticed several young girls in one family shared symptoms of a bleeding disorder. The year was 1924, and von Willebrand recognized that the girls鈥 symptoms were different from those of someone with hemophilia, a disease mostly affecting males. He called this new disease pseudohemophilia, or false hemophilia, but others […]
By: Kyle聽McKendall, Staff Member Photography by Kevin Daniels Taken from the Summer 2016 issue of Dateline: Full PDF available here For the first time ever, HFA offered a comprehensive Spanish-language program at its annual Symposium, held in Las Vegas from March 30-April 2, 2016. More than 50 attendees participated in the program and attended […]
By Michelle Morath 鈥淗ealthy Bodies Bleed Less鈥 continues to be the mantra of HFA鈥檚 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. […]
By Michael Zolotnitsky, PT, DPT Growing up with hemophilia made waking up with bruises, joint pain, or the inability to bear weight on my ankles聽a normal occurrence. Time and time again, my mother had to drive me to the local hematology clinic to have factor infused. I did not feel like a normal child. I […]
Note: The following appears in our Spring 2016 edition of聽Dateline Federation.聽Please see the full issue for all the amazing community support shown for Bleeding Disorders Awareness Month! For the past 30 years, the bleeding disorders community has unofficially recognized Hemophilia Awareness Month during the month of March. The name originated from a proclamation made by […]
It is recognized in the bleeding disorders community that opioid聽medications can be a helpful addition to the treatment plan聽for patients experiencing refractory acute pain, as well as聽for those with long-standing chronic pain 聽resulting from joint聽disease. Opioids as a class of drugs are used for many types of聽pain. According to the Centers for Disease Control and […]
鈥淭hroughout the CHOICE Project we heard from numerous women about their lack of access to the diagnosis and care they need as patients with bleeding disorders. Many women explained that doctors told them women can鈥檛 have hemophilia, or a bleeding disorder, and otherwise how providers were dismissive of their symptoms and pain.鈥 鈥 Wendy Owens, […]
Kelly and Brian of Oregon never expected their son, Bubba, to have severe hemophilia A, and they certainly never expected Bubba to experience the complications of an inhibitor and chronic pain in his childhood. Kelly shared her family鈥檚 experiences with HFA with hopes that other families can learn from their experiences. How did you find […]
Pain is a very personal experience. Everyone has their own definitions, feelings, and memories associated with pain. Some pain is greater than others. Some pain paralyzes you, and some pain motivates you. How someone chooses to define and cope with pain is molded by his/her experiences throughout a lifetime. Below is a story of one […]
While some women experience bleeding symptoms monthly or even more frequently, other women may go years before bleeding issues are recognized, making a diagnosis even more difficult. Jennifer was a hemophilia carrier for 33 years before she had her first bleed. She shares the emotional and physical pain she endured as she struggled to get […]
Spring is the time for new opportunities. Days are getting longer, trees are budding, and those cool breezes are finally turning warm. Spring is an opportunity to revitalize ourselves and get back into action after winter鈥檚 long hibernation. With more opportunities for exercise and outdoor activity, spring is a great time to get off the […]
NOTE: This is the second of a two-part story. Click here to read Part I. Working to identify problems and explore solutions among the bleeding disorders healthcare system, the Care Access Working Group (CAWG) continues the efforts on behalf of Project Reaching Everyone Directly (RED). CAWG listens to stories from across the bleeding disorders community […]
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Phone: 202.675.6984
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Email: info@hemophiliafed.org
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