Hemophilia Federation of America is a national nonprofit organization that assists, educates and advocates for the bleeding disorders community.
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 […]
The HFA team is excited to welcome a new group of students to our summer 2021 internship program! They will be participating in our annual Advocacy internship virtually, developing their passion in health care policy and self-advocacy. They will be participating in regular webinars and online training about legislative, policy and advocacy issues, learning more […]
The HFA team is excited to welcome a new group of students to our summer 2021 internship program! They will be participating in our annual Advocacy internship virtually, developing their passion in health care policy and self-advocacy. They will be participating in regular webinars and online training about legislative, policy and advocacy issues, learning more […]
Call for Poster Abstracts In an effort to make research findings more accessible to patients and caregivers who have an interest and who participate in research projects and initiatives, HFA is inviting you to disseminate your research findings to patients and/or their caregivers in an atmosphere that is comfortable and encourages one-on-one opportunities for questions […]
Thank you for being a friend (if that song stays with you all day, you can thank me). A lot of the time we in the bleeding disorder community talk about it being a family. Here鈥檚 the thing: you all are my family. I have some blood family that I barely know, because I […]
Hemophilia Federation of America is committed to transparency, a fact recently recognized when the organization received a four-star rating by Charity Navigator and a Platinum Seal of Transparency by GuideStar, two respected nonprofit watchdogs. With an annual operating budget of more than $6 million, HFA relies on a diversity of funding sources and is […]
Featured Story: Federal court rules that the ACA is unconstitutional: Texas v. Azar On Friday, Dec. 14, we learned a federal judge had ruled in the case of Texas v. Azar聽that the Affordable Care Act is unconstitutional in its entirety. This news has alarmed many. HFA staff posted a number of updates to tell the […]
鈥525,600 minutes鈥525,000 moments so dear.鈥澛 Just like the song from the musical 鈥淩ent,鈥 those 525,600 minutes go so quickly, and you feel as though in a blink of an eye the year is gone. As we see the finish line of another year, I can鈥檛 help but look back at 2018 with mixed emotions. For […]
On Liam鈥檚 first day of kindergarten in late August, we brought him to school with a mix of pride, fear, excitement, and tears. Okay, I was the only one who shed the tears, but we were all ready for this big day to arrive.聽 Though I was nervous, I had spent a lot of time […]
About a year or so ago, I thought it would be a great idea for HFA to apply to be a Charity Partner for the Marine Corp Marathon in Washington, D.C.聽 When we were selected, I was beyond excited.聽 Running a marathon was on my bucket list.聽 I know, really clich茅, but true.聽 It was […]
This post is written as a special shout-out to my husband; a hemo dad, and all the other caregivers who have patience just like my husband Shane. I鈥檓 pretty lucky to have a husband who is very involved in Maddox鈥檚 infusions. My husband, Shane, gives Maddox his infusions three times a week. As a full-time […]
On June 12,2018, we hosted our 5th Annual Patient Fly-In in Washington, DC聽alongside an online聽Virtual Hill Day. . With that in mind, patient representatives asked Senators and Representatives to protect affordable coverage for people with pre-existing conditions, ensure that insurance plans provide meaningful coverage and an appropriate scope of health benefits; protect people against potentially […]
Every year at Symposium, there is some special moment that defines that year鈥檚 event for me. As we kick off our 2018 event tomorrow, I鈥檓 reflecting back on my favorite memories from the last five years of Symposium: 2013: Frisco, TX (I actually have two favorite memories from this year.) 聽 This picture encapsulates our […]
Some of us love exercise.聽 Some of us (me!) hate it but love it when you鈥檙e done.聽 What do you find to be the hardest part of exercising?聽A lot of times it鈥檚 finding the time.聽As moms we鈥檙e pulled in a thousand different directions all throughout the day.聽 Between jobs, kids, and spouses, there is never […]
I have seen signs for the last few years, but on a cold day just before Christmas, I saw my 14-year-old son not as a little boy, but as a young man. There wasn鈥檛 anything extraordinary happening in the moment. He sat at one end of our sectional couch and I was sitting on the […]
鈥淪o, he鈥檚 still wearing the helmet?鈥 The question, posed by HTC staff at our recent annual visit, gave me pause. Yes, my son is almost 5 years old and still wearing his helmet any time his feet are on the floor. I know this is a controversial topic. I鈥檝e seen the comment threads on many […]
HFA鈥檚 Research Team gave and received early an holiday gift this year: knowledge. We attended the 59th annual meeting of the American Society of Hematology (ASH) in Atlanta, Georgia, December 9-12. The unofficial song of the meeting was 鈥淟et it Snow鈥 as that (along with the once standing Georgia Dome) is what was on the […]
It is safe to say that most of hemophilia has been unexpected. Even when you are planning for the unexpected you get another unexpected in its place, sort of a Murphy鈥檚 Law type deal. And yet, I am always finding things about hemophilia that I never expected from our experience. One of the most profound […]
It’s been two months since wildfires ripped through Northern California leaving a path of destruction in Sonoma and Napa counties like I鈥檝e never seen before and leaving a scar on all of our hearts. I got to see firsthand the importance of community and was proud to see our bleeding disorder community come together to […]
Some of the best sessions I have attended at conferences have been rap sessions. These sessions bring together certain sub-groups in the bleeding disorder community and allow them to have open conversations, asking questions and sharing information with each other. At one rap session, many years ago, a mom in the parents rap session was […]
I get some pretty stunned responses when I tell family and friends that I am grateful for hemophilia. They can鈥檛 understand how it is possible that I can be thankful that my son, Thomas, has unexpected, ill-timed, and painful bleeds.聽 How could anyone find good in dealing with a nonsensical insurance company? Obviously, I could […]
The following is an edited excerpt from a press release from Genentech. To read the press release in full, click here. Genentech, a member of the Roche Group, announced positive results from the Phase III HAVEN 3 study evaluating Hemlibra聽(emicizumab-kxwh) in adults and adolescents (aged 12 years or older) with hemophilia A without inhibitors to […]
The past six months have been hard. Like hemophilia was managing us instead of us managing hemophilia. I can鈥檛 remember the amount of times I sobbed out of frustration, fear and being powerless to help my son. We are still muddling through and each day is a battle. A battle where it seems like we […]
By offering additional resources and education about the benefits of self-care and exercise for young adults, we hope to inspire a lifetime of healthy choices and habits!聽Our guests on this聽podcast聽are聽Kathryn Clark, a retired dietician, and Eric Burgeson, an active young adult with hemophilia. Kathryn and Eric聽iscuss ways to keep costs low at the grocery store […]
If you look up National Caregiver鈥檚 month on your computer, you will find several items from the Caregivers Action Network (CAN) before anything else. If you look through the stories, tips and suggestions you will see that most of them relate to adult children caring for parents. You can find the 2016 proclamation from President […]
I lost my job on a Monday. The following Tuesday, I was making the hour-long trek to our HTC for bi-monthly prophy for my 15 month old son, Ben. I had a lot of time to think about what had just happened, what in the world I was going to do, and where to go […]
By offering additional resources and education about the benefits of self-care and exercise for young adults, we hope to inspire a lifetime of healthy choices and habits!聽Our guest on this聽podcast is James DeFilippi, a triathlete who tells us everything that goes into his training, from his training regimen to the technology he uses to work […]
Note: The following is the full text of an email communication received by HFA from Bayer HealthCare Pharmaceuticals: Bayer in consultation with the FDA has voluntarily recalled approximately 300 vials (part of one lot) of Kogenate庐 FS, Antihemophilic Factor (Recombinant) in the U.S. as聽an excipient, used to stabilize the product during manufacturing, may not conform […]
It’s hard to envision what life is going to look like for my little Maddox when he enters preschool or elementary school in a few years. Right now I focus on the moment and each day as Maddox gets older. He had his first birthday last week and off he went. He took his first […]
For many of us, the biggest challenge to getting physical activity is just putting our minds to it. We all know how easy it is to talk ourselves out of something 鈥 and exercise is no exception. There are tons of ways we can keep our bodies healthy and active, so it doesn鈥檛 need to […]
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