Hemophilia Federation of America is a national nonprofit organization that assists, educates and advocates for the bleeding disorders community.
Six new states enact prohibitions against copay accumulator adjusters Bills preventing health plans from pocketing the cost-sharing assistance provided by manufacturers or non-profits (and refusing to apply it to a consumer鈥檚 deductible or out-of-pocket maximum) were signed into law this session in six additional states. The victories in Arkansas (H.B. 1569), Connecticut (S.B. 1003), […]
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 […]
Every year, HFA holds an inspiring and fun Young Adult Advocacy Summit (YAAS) in Washington, DC. In 2020, we had to go virtual, but we are so pleased to announced that we are back in person this September 18 – 21! YAAS was established to introduce young adults to legislative and personal advocacy in a […]
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 […]
The following is sourced from a press release from Sigilon Therapeutics. Read the update in its entirety聽here. The U.S. Food and Drug Administration (FDA) has placed a clinical hold on Sigilon Therapeutics鈥 phase 1/2 study of SIG-001 in patients with severe or moderately severe hemophilia A. SIG-001 is a cell-based therapy, designed to carry significant […]
Looking for an evening of family fun? Join HFA and Beyond Recreation as we bring you All Out Break Out, an interactive evening of family fun and friendly competition with other families in the bleeding disorders community! Date & Time Wednesday, August 4, 2021 at 7:00 pm ET A box of activity supplies will be […]
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 Affordable Care Act Remains the Law of the Land On June 17th, the U.S. Supreme Court handed down its long-awaited decision in California v. Texas, a case challenging the constitutionality of the Affordable Care Act. By a 7-2 vote, the Supreme Court held that the parties objecting to the ACA (18 state attorneys general […]
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 […]
WASHINGTON, D.C 鈥 June 17, 2021 鈥 34 patient organizations representing millions of people living with serious and chronic health conditions issued the following statement regarding the Supreme Court鈥檚 ruling upholding the Affordable Care Act: 鈥淧atients across the country are finally breathing a sigh of relief. For years, they鈥檝e faced uncertainty about the future of […]
The positive is that we have not lost contact and we are more united than ever. 鈥擜na, hemophilia mom Hello. My name is Ana and I live in El Paso, Texas. Today’s topic that I want to share with you is undoubtedly about COVID-19. We all know that everything has changed because of the pandemic […]
It has given us time together and a chance for him to open up and share and for that I am grateful! 聽鈥 Jen, hemophilia mom There is a lot of 鈥渘o鈥 in a house where hemophilia lives. While I would like to think that myself and my husband have been good about keeping an […]
ACA ENHANCEMENTS BOOST HEALTH PLAN ENROLLMENT The U.S. Department of Health and Human Services announced on May 11 that more than 1 million Americans have signed up for coverage on www.HealthCare.gov during the Special Enrollment Period (SEP) that opened February 15. The SEP 鈥 still ongoing, in most states 鈥 creates broad new opportunities for […]
The Hemophilia Federation of America and the National Hemophilia Foundation are pleased to share a new partnership called the Together Project. Through the Together Project, HFA and NHF will work collaboratively on important issues that affect the bleeding disorders community. The first collaboration is focused on mental health and wellness in the bleeding disorders community, […]
Hemophilia Federation of America (HFA) is pleased to offer free聽Mental Health First Aid聽training through an internationally renowned program by the聽National Council for Behavioral Health聽as part of HFA鈥檚 2021 Mental Health and Wellness Initiative. Participants who complete both sections of the course will receive a Mental Health First Aid certificate indicating they have been trained in […]
BioMatrix Annual Scholarships Each year, BioMatrix offers six (6) $1000 scholarships to college students in our bleeding disorders community. Each scholarship has a unique eligibility requirement based on the applicant’s bleeding disorder or relationship to someone with a bleeding disorder. Unique Eligibility Requirements for each Scholarship BioMatrix Joe Holibaugh Memorial Scholarship:聽Men and women diagnosed with […]
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 […]
Hemophilia Federation of America (HFA) and the National Hemophilia Foundation (NHF) are teaming up to offer an educational webinar to review all the benefits of the new American Rescue Plan聽law enacted in March 2021. If you buy your own health insurance (on- or off-Marketplace), or if you have recently lost your job, you may qualify […]
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 […]
Hemophilia Federation of America is pleased to announce an upcoming event, Dateline Live: Navigating Approved Products and Emerging Therapies. Save the Date! This four-day, online event will take place from June 23-25, 2021 and will help patients and caregivers with daunting responsibility of navigating available treatment options and emerging therapies.聽 Annually, we鈥檝e compiled a comprehensive […]
Hemophilia Federation of America is proud to announce that the organization has been awarded the 2021 Gold 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.聽 MHA, founded in 1909, […]
In early 2021, Hemophilia Federation of America surveyed members of the bleeding disorders community to gauge their response to the COVID-19 vaccine. The survey was conducted from January 22 to March 15, 2021. For the first half of this time frame, the Pfizer and Moderna vaccines were being administered; for the second half, the Johnson […]
HFA through the Bleeding Disorders Health Disparities Council (BDHDC) is launching a survey that will help to inform the organization, community and other key stakeholders about the existence and impact of health disparities and inequities within bleeding disorders. The survey will provide HFA with a greater understanding of health equity, diversity and inclusion, and it […]
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