Hemophilia Federation of America is a national nonprofit organization that assists, educates and advocates for the bleeding disorders community.
For the second year in a row, HFA鈥檚 Patient Fly-In took place as a virtual event. Two dozen community members together with HFA staff made forty (!) Zoom visits with Congressional offices during the week of November 15th. The timing of the Fly-In 鈥 always a bit of a gamble 鈥 ended up being very […]
Dear Addy, I know Open Enrollment for 2022 health insurance began on November 1, 2021. As a person with a bleeding disorder, what do I need to know, and how should I go about choosing my options? Signed, Anxious About Insurance Dear Anxious, You are right that Open Enrollment just began. Open Enrollment is the […]
Due to ongoing concerns regarding public gatherings and the impact of COVID-19 on in-person legislative visits, HFA is again holding its annual Patient Fly-In and Congressional Reception experience as an online campaign. The event is taking place from November 15-19, 2021. On November 16th, grassroots bleeding disorders advocates are participating in Congressional visits by video […]
Policy and advocacy sessions were among the many programs on tap at HFA鈥檚 recently concluded 2021 Symposium. Thank you to all who attended! It was wonderful to 鈥渟ee鈥 you at our virtual event 鈥 even as we plan, and fervently hope, to see you in person at HFA鈥檚 2022 Symposium in San Antonio. For those […]
Dear Addy, I am a Medicare beneficiary weighing my plan options for 2022. 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 […]
In this quarter鈥檚 news: advocates notch another win, securing state level protection against copay accumulator adjusters; Missourians begin enrolling in the state鈥檚 expanded Medicaid program; and ACA marketplaces report 2021 enrollment totals, rates for 2022, and other developments. North Carolina becomes 12th state to ban copay accumulator adjusters Governor Roy Cooper signed S.B. 257 into […]
Monoject Flush Prefilled Saline Syringes by Aligned Medical Solutions: Recall – Due to Potential for Plunger to Draw Back After Air Has Been Expelled and Reintroduce Air Back into Syringe Read the full press release from the FDA Issue: Aligned Medical Solutions is recalling Cardinal Health鈥檚 Monoject Flush Prefilled Saline Syringes placed into 9,378 kits. […]
Inherited bleeding disorders, such as hemophilia and von Willebrand disease, have long been underrecognized as causes for bleeding in females. Part of the problem with this under recognition has been the lack of female engagement in research related these bleeding disorders. Through The Patient-Centered Outcomes Research Institute (PCORI) funded engagement project, the PRIDE […]
We鈥檝e missed you. It鈥檚 been too long, and it鈥檚 time to reunite with your Blood Sisters. Join us for an evening of connecting聽with women who understand living with Bleeding Disorders. We鈥檙e reuniting for a fun and festive Sister Space Craft and Connect Night on November 10 at 8pm ET 聽/ 7pm CT / 6pm MT […]
As September ends, HFA continues to closely monitor action on the 鈥淏uild Back Better鈥 Act. Congressional leaders are trying to pass this legislation, which embodies President Biden鈥檚 social infrastructure agenda, via the budget reconciliation process (i.e., a simple majority vote, almost certainly along party lines). The bill, which includes numerous health care proposals, comes with […]
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 […]
Important Update Regarding Availability of Stimate Recently, CSL Behring announced that the company has chosen to end their distribution agreement with Ferring Pharmaceuticals for STIMATE庐 nasal spray, effectively thereby removing this medication as a valuable treatment option for patients with von Willebrand Disease (VWD) and mild hemophilia A. Background For over a year now, STIMATE庐 […]
FOR IMMEDIATE RELEASE聽 Media Contacts Ilana Ostrin, National Hemophilia Foundation iostrin@hemophilia.org 212-328-3769 Meghan Lawton, Hemophilia Federation of America m.lawton@hemophiliafed.org 607-423-4496 National Hemophilia Foundation and Hemophilia Federation of America Partner for 鈥淭ogether Project鈥 New partnership kicks off with a focus on mental health New York, NY/Washington, D.C.鈥 Today, the National Hemophilia Foundation (NHF) joins the Hemophilia […]
With Medicaid much in the news in August, it seemed timely to offer a refresher on how Medicaid is structured, and why it鈥檚 important to many in the bleeding disorders community. Medicaid is a public health insurance program for low-income individuals, families, seniors, and people with disabilities. States set up and run their own Medicaid […]
September is Suicide Prevention Awareness Month HFA has established a partnership with the American Foundation for Suicide Prevention. There are resources available at the local level and outreach being done in September in particular to address the increasing levels of suicide across the country. Additional Resources Information on聽how to reach a local chapter Information on聽Talk […]
Hemophilia Federation of America acknowledges that our staff and the bleeding disorders community hold many identities and experience oppression and biases, including the very real impact of systemic racism and racial prejudice. As an organization, we reject all forms of racism and vow to uphold an anti-racist culture. We recognize that it requires ongoing examination […]
Summer鈥檚 wrapping up and many children, like yours, are preparing to return to school, or to go to school for the first time. If the thought of your child going back to school fills you with dread, you are not alone. It is normal to feel stressed as you assist your child with their transition […]
So you’re headed to college, and you have a bleeding disorder. Need some advice? In this episode, former HFA Policy and Government Education Summer Intern, Will Hubert, chats with Matt Delaney and Chantel Winslow about their experiences navigating college with a bleeding disorder. For more information聽email Kimberly Ramseur, Senior Manager for Policy & Advocacy at […]
Summer鈥檚 wrapping up, and many young adults, like you, are preparing to return to their college campus, or to step foot on campus for the first time. If the thought of going back to school fills you with dread, you鈥檙e not alone. It鈥檚 normal to feel stressed or lonely sometimes, especially as you transition away […]
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 […]
August 24 | 8:00 pm ET Have you ever faced a barrier to employment because of your bleeding disorder or financial issues? You’re not alone! Join us as we speak to community members who are overcoming barriers and achieving their career goals. We鈥檒l also recognize recipients of HFA’s Job Readiness Grants and share how you […]
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 […]
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