Hemophilia Federation of America is a national nonprofit organization that assists, educates and advocates for the bleeding disorders community.
Traditionally, women often wait years for a proper bleeding disorders diagnosis. But more awareness, advocacy and treatments are improving things now and for future generations.聽 By Risa Kerslake, Freelance Writer Kristin Voyles didn鈥檛 know growing up that she had von Willebrand disease (VWD). Looking back though, it made sense. She bruised easily and had heavy […]
Hemophilia treatment centers have been around for almost 50 years. Learn about their history, successes, and new challenges.聽 By Rebecca A. Clay聽 At 58, Michael Birmingham, of Tacoma, Washington, is old enough to remember what life was like for kids with bleeding disorders before the advent of hemophilia treatment centers (HTCs). Diagnosed with severe hemophilia […]
New HFA Job Readiness Grants help community members reach their career goals and improve their lives. By Allison Harrison, MSW, Associate Director of Services聽 Have you ever felt stuck in your career with low pay, limited opportunities that fit your needs or lack of advancement potential? You鈥檙e not alone.聽 鈥淏etween my physical health and the […]
Hogan Lust has become a teenage standout in one-arm golf association tournaments By Melanie Padgett Powers, Managing Editor Hogan Lust, age 16, of Tucson, Arizona, has been playing golf since he was a toddler. His parents, Daniel and Corby, are golfers too, so it was only natural their oldest child would play the sport.聽 鈥淗e […]
Members of the bleeding disorders community gathered virtually in September for the HFA Young Adult Advocacy Summit. Here, two first-time participants share their stories and explain why they wanted to get more involved with advocacy efforts.聽 Rodr铆guez-Rivera,聽Bayam贸n, Puerto Rico In September, I attended the Hemophilia Federation of America (HFA) virtual Young Adult Advocacy Summit. I […]
by Melanie Padgett Powers, Managing Editor When Josh Morton rolled his right ankle shooting hoops at college, he thought factor and RICE鈥攔est, ice, compression, elevation鈥攚ould heal it. But his pain and swelling quickly grew, so he called his mom, who told him to head to the emergency room (ER). What happened next showed Josh and […]
Several bleeding disorders families share their adoption experiences and advice. 聽 By Holly Leber Simmons, freelance writer Natalie Andrews remembers the first time she saw a picture of her son, Samuel, in 2016. 鈥淗e looked terrible. He had black eyes and it looked like someone had punched him,鈥 she said. 鈥淗is joints were badly swollen; […]
We welcome the first generation of men with hemophilia living into older age鈥攁nd explore the medical issues that come with it. By Heather Boerner, freelance writer When Dan Liedl, who has severe hemophilia A, wakes up in his Morgantown, West Virginia, home every morning, he feels fine. It鈥檚 only when he starts to move that […]
Reflections on financial assistance in a pandemic. By Allison Harrison, MSW, HFA Associate Director of Services聽 Gavin and Nieve* were making ends meet until the COVID-19 pandemic hit. Nieve lost two different jobs in 2020 when the companies that employed her lost business and laid off workers. Gavin, who has hemophilia A, picked up additional […]
HFA Events Motivated Maine Mom to Create Museum Fundraiser By Melanie Padgett Powers, Manager Editor of Dateline Through Hemophilia Foundation of America鈥檚 (HFA鈥檚) fundraising efforts, Lianne Lapierre, of Limestone, Maine, discovered her love of biking and running at age 40. Lapierre, whose 14-year-old son has severe hemophilia A, took part in HFA鈥檚 Team Resilience for […]
Gears for Good National Bike Ride back in person By Meghan Lawton, HFA Associate Director, Advancement Water bottles were full. Helmets were donned. Shoes were clicked in. It was time to saddle up. Hemophilia Federation of America鈥檚 (HFA鈥檚) 2021 Gears for Good National Bike Ride was underway! September 17鈥19 marked the 12th edition of the […]
By Whitney Armijo, Research聽Project聽Coordinator In the past two years, two Hemophilia Federation of America (HFA) projects have aimed to empower women in the bleeding disorders community to take part in research and advocate for their own health.聽 In 2019, the HFA research team created Females In Research Sharing and Translation (FIRST) to gather more details […]
By Melanie Padgett Powers, MANAGING EDITOR As a kid growing up in Nepal with hemophilia A, Sushant Sharma Bhattarai, now 22, wasn鈥檛 allowed to run around, ride bikes or play sports. Factor replacement therapy wasn鈥檛 available in his country, and the risk was just too great.聽 Later, living in California as a teenager, he still […]
By Ann B. LeWalk, HFA Vice President for Education It is safe to say that throughout the past 18 months, most of us have become increasingly aware of the importance of fostering and maintaining our own mental health, while also trying to look out for that of others. We have also come to know that […]
It was just before 4 p.m. when Hemophilia Federation of America (HFA) President and CEO Sharon Meyers, EdD, CFRE, turned on her webcam and tested her microphone in the organization鈥檚 office in Washington, DC. More than 1,500 miles away in her home state of Colorado, HFA Vice President of Policy and Advocacy Sonji Wilkes did […]
Hemophilia Federation of America (HFA) has been awarded the 2021 Platinum Bell Seal for Workplace Mental Health by Mental Health America (MHA). This Bell Seal is a first-of-its-kind workplace mental health certification that recognizes employers who strive to create mentally healthy workplaces for their employees. 鈥淲e are incredibly proud to be among the first organizations […]
Hi Friends, I hope you all have had a wonderful summer! One of my favorite parts of summer is enjoying time outdoors, and I鈥檝e been able to continue gardening in my backyard garden, as well as take lots of walks around my neighborhood. I even had the chance to go backpacking with my husband for […]
By Melanie Padgett Powers, Managing Editor Podcasting is considered a more personal form of communications. Listeners feel like they know the podcast host, who seems to be talking directly into their ears on a regular basis.聽 That personal connection allows podcasters and their fans to build a community around whatever the topic is. Last summer, […]
The Hemophilia Federation of America (HFA) team welcomed a new group of students to its summer 2021 internship program. The students participated in this annual advocacy internship virtually, developing their passion in health care policy and self-advocacy. They participated in regular webinars and online training about legislative, policy and advocacy issues, as well as learning […]
The Hemophilia Federation of America鈥檚 Learning Central now offers a Mental Health and Wellbeing courses, which provides a library of information and resources that you can explore at your own pace and revisit at any time. Specific topic areas include anxiety, suicide, trauma, pain, depression, grief and more. HFA staff had its first conversation about […]
Hi Friends, With spring upon us and everything in full bloom, I hope you鈥檝e had a good start to the year and found time to recharge and energize. My husband and I were able to spend some quality time with a few family members. I’ve been loving spending time in my new backyard garden 鈥 […]
How I fight against hemophilia and depression. By Michael Bishop, staff writer and content design specialist for HFA鈥檚 Learning Central. I鈥檝e been wanting to write this article for a few months now. It seems like the conversation surrounding mental health is one constantly being had in the hemophilia community, and even so, is the one […]
By Melanie Padgett Powers, Managing Editor Ryan Seeley, of Orchard Park, New York, has dealt with mental health issues for most of his life. About 10 years ago, Seeley, now 52, was forced to retire from the nursing career he loved and go on disability. He has severe hemophilia A and multiple chronic illnesses, including […]
By Ann LeWalk, MA, HFA Vice President of Education聽 In the best of times, people with bleeding disorders are at a greater risk of depression. However, during the COVID-19 pandemic, the isolating effects of a chronic disorder, coupled with the forced social distancing, has only magnified mental health issues in the bleeding disorders community.聽 Recognizing […]
Provided by and printed with permission by BioMarin It鈥檚 not magic鈥攊t鈥檚 science in progress. Many gene therapies are under investigation and some have been approved for use for conditions other than hemophilia A or B. The risks and benefits of each gene therapy are evaluated independently, and if a clinical trial for a particular gene […]
By HFA Policy and Advocacy Team, with assistance from an actuarial professional For many in the bleeding disorders community, drug manufacturer copay assistance programs are a source of financial relief and the sole protection against perpetually high out-of-pocket health care costs. Unfortunately, health insurers, citing the need to curb medical inflation, are increasingly refusing to […]
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 […]
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