HFA News

Infusing Love: Gratitude

June 2, 2021

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 […]

Washington Wire: May 2021

May 27, 2021

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 during the Special Enrollment Period (SEP) that opened February 15. The SEP 鈥 still ongoing, in most states 鈥 creates broad new opportunities for […]

National Bleeding Disorders Organizations Announce Collaborative Project

May 13, 2021

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, […]

HFA Hosts Mental Health First Aid Training

May 10, 2021

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 Scholarships Deadline August 1, 2021

May 10, 2021

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

April 29, 2021

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 […]

A Tumultuous Year, Few Changes for Treatment Options

April 29, 2021

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 […]

A Look at FDA鈥檚 Gene and Cell Therapy Framework and its Impact on New Hemophilia Treatments in 2021 and Beyond

April 29, 2021

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 […]

A Look at the Drug Recall Process

April 29, 2021

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 […]

COVID-19 Vaccines Don’t Stop Emerging Therapy Options for Those with Bleeding Disorders

April 29, 2021

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, […]

Clinical Studies: How Do They Work?

April 29, 2021

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, […]

Informed Consent: A Process, Not Just a Form

April 29, 2021

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 […]

Lower Your Health Care Costs Webinar: How the American Rescue Plan Helps You

April 26, 2021

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 […]

US Food and Drug Administration’s Drug Approval Process

April 26, 2021

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 […]

Announcing Dateline Live: Navigating Approved Products and Emerging Therapies聽聽

April 26, 2021

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 […]

HFA Awarded Gold Bell Seal for Workplace Mental Health聽

April 23, 2021

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, […]

2021 COVID-19 Survey Results

April 14, 2021

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 […]

Bleeding Disorders Health Disparities Council Survey

April 14, 2021

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 […]

Hemophilia Federation of America Offers $1000 Grants to Learn New Skills and Help Land Your Dream Job!

April 9, 2021

The 2021 application period is now closed. Decisions will be announced in June 2021. Could you use $1000 gain a skill or certification to help you get a job? Are you an adult (age 18 – 64) with a bleeding disorder? You may be eligible for an HFA Job Readiness Grant! From bookkeeping to blogging, […]

COVID-19 Resources and Updates

April 8, 2021

Updates During this time of rapidly-changing news surrounding the COVID-19, HFA聽will publish information and resources about to assist our bleeding disorders community. Vaccinations HFA Financial Assistance Other Resources Fraud Alerts Medical, Industry and Product News  

Bleeding Disorders Community Surveys

April 7, 2021

Your story can impact the entire community! When you share your story, Hemophilia Federation of America is able to create better programs and services to support the needs of the bleeding disorders community and make positive change through advocacy and policy efforts. Below are the community surveys currently open: Are You a Woman with Hemophilia […]

HFA Staff Member Lends Voice as a Hemophilia Mom in Support of Maryland Bills to Protect Financial Assistance

April 1, 2021

Carrie Koenig, Programs Director at Hemophilia Federation of America, stepped outside her role as staff of HFA and used her experience as a mom of a child with hemophilia to write an article, which appeared in The Daily Record in Maryland on Feb. 18, 2021. Read Carrie鈥檚 piece: In addition to the devastating health impact […]

Washington Wire: March 2021

March 31, 2021

COVID relief legislation makes health coverage more accessible and affordable On March 11, 2021, President Biden signed the $1.9 trillion American Rescue Plan Act into law. This sweeping measure provides economic relief to individuals, families, businesses, schools, and state and local governments. The law offers new incentives for holdout states to expand their Medicaid programs […]

REVIEW YOUR HEALTH COVERAGE: Recent Federal Law Lowers Costs, Opens Up New Options

March 31, 2021

The American Rescue Plan (ARP), signed into law on March 11, 2021, provides new opportunities to get health insurance coverage, and/or to reduce the cost of your premiums. Review your coverage now to make sure you are maximizing your benefits under the new law! WHO SHOULD REVIEW THEIR COVERAGE? Anyone who is currently uninsured or […]

HFA Joins 29 Other Patient Groups Urging Lawmakers to Limit the Spread of Substandard, Non-ACA-Compliant Health Plans

March 26, 2021

Thirty patient groups, representing millions of Americans who live with pre-existing conditions, published a new report that describes the risks patients face when they enroll in non-compliant, substandard health insurance products. The report calls on federal and state lawmakers to take immediate action to limit the proliferation of these inadequate health plans. The report, Under-Covered: […]

NORD Announces Findings on Available Orphan Products, Generics and Biosimilars for Rare Diseases

March 26, 2021

The following is an excerpt from a press release from Sanofi. Read the full press release here. The National Organization for Rare Disorders (NORD庐)聽announced the聽findings of a new study that details聽the聽number聽of聽orphan products,聽generics and biosimilars聽available to treat rare diseases.聽NORD聽commissioned聽Avalere to conduct聽the聽analysis聽to examine if聽laws and regulations are聽helping to聽bring new treatments聽to market聽for rare disease patients.聽 According to the聽report,聽the […]

Statement: HFA Stands with Asian American and Pacific Islander Community

March 19, 2021

Hemophilia Federation of America condemns and denounces all acts of racism, xenophobia and intolerance against the Asian American and Pacific Islander community. We stand with our AAPI community against the alarming rise in violence they have endured. HFA remains committed to promoting racial and social equity, standing up for our AAPI staff and community members, […]

State of States: Spring 2021

March 19, 2021

All ACA Marketplaces Create New Special Enrollment Periods Due to COVID-19 All 15 of the state-based Marketplaces (SBMs) created pursuant to the Affordable Care Act have established a COVID-19 Special Enrollment Period for 2021 following the Biden Administration鈥檚 decision to reopen the federally-facilitated Marketplace (FFM) from Feb. 15 through May 15. SBMs can create their […]

Hemophilia Federation of America to Host Panel of Mental Health Professionals March 25

March 17, 2021

Hemophilia Federation of America will host the Mental Health Providers Forum at 7 p.m. ET on March 25, featuring an excellent panel of mental health professionals discussing mental health topics discovered to be important to the bleeding disorders community. During the live online session, these four esteemed mental health experts from around the country will […]

Central California Hemophilia Foundation Industry Symposium to feature HFA CEOand VP of Policy and Advocacy

March 10, 2021

Two of America鈥檚 top leaders and advocates for the bleeding disorders community will keynote Central California Hemophilia Foundation鈥檚 annual Industry Symposium and World Hemophilia Day celebration on Saturday, April 17 from 9 a.m. to 3 p.m. Dr. Meyers, who has an extensive background in nonprofit leadership and fundraising, has been in her CEO position with […]

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