Hemophilia Federation of America is a national nonprofit organization that assists, educates and advocates for the bleeding disorders community.
Dear Friends颅鈥 One of our guiding principles since our founding has been to provide the tools and education patients and their families need to make informed decisions about their bleeding disorder. This annual special edition of Dateline Federation is a product of our focus on that principle. We hope you find this tool helpful in […]
Our last product guide hit the presses in early April 2020, right as the coronavirus caused the world to come to a screeching halt. At the time, many assumed a few weeks of lockdowns would control the virus. Yet here we are a year later, with almost everything we considered to be a temporary change […]
More cell and gene therapy products are being developed and entering clinical trials each year. The U.S. Food and Drug Administration plays a key role in overseeing drug development, including providing guidance and receiving investigational new drug applications or requests to start a new clinical trial submitted by drug developers.聽 In 2021, there are more […]
By HFA staff 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 […]
By HFA Staff with scientific review by Dr. David Clark and Dr. Lisa Hensley Many people have questions about the COVID-19 vaccines. This article will answer one primary question: Can getting vaccinated for COVID-19 cut off treatment options for emerging bleeding disorder treatments and therapies? Of the three vaccines currently available in the United States, […]
By HFA Staff with sourcing from the National Institutes of Health鈥檚 National Library of Medicine A clinical study involves research using human volunteers (also called participants) that is intended to add to medical knowledge. There are two main types of clinical studies: clinical trials (also called interventional studies) and observational studies. In a clinical trial, […]
聽By HFA Staff Patients with bleeding disorders are no strangers to engaging in conversations with medical, research and pharmaceutical staff. Emergency rooms, doctors鈥 offices, pharmaceutical company offices, conference rooms and exhibit halls have all become places to engage in medical discussions. Each of these venues has different, but similar, codes of ethics to follow when […]
What is a Drug, as Defined by the FDA? A drug is any product that is intended for the use in the diagnosis, cure, mitigation, treatment or prevention of disease and is intended to affect the structure or any function of the body. Pre-Clinical Drug Sponsor’s Discovery and Screening Phase: Drug sponsor develops a new […]
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 […]
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