News & Perspectives

34 Patient Groups: Preservation of protections is an important win 鈥 but critical work remains

June 17, 2021

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 […]

Patient Groups聽Praise Supreme聽Court Ruling Upholding Health Care Law,聽Preserving Critical Patient Protections聽聽

June 17, 2021

Patient Groups聽Praise Supreme聽Court Ruling Upholding Health Care Law,聽Preserving Critical Patient Protections Justices Throw Out Case Citing Lack of Standing by Plaintiffs Washington, D.C.鈥擩une 17, 2021鈥斅燭he nation鈥檚 leading patient advocacy groups are praising the U.S. Supreme Court ruling聽today聽upholding聽the聽health care law known as the Patient Protection and Affordable Care Act (ACA).聽The Court聽ruled the plaintiff states and taxpayers […]

Infusing Love: COVID-19 and A Bleeding Disorder

June 17, 2021

Hello, my name is Lupe Torres and I live in the city of Las Vegas, NV. I have three children: Alex (25), Jesse (19) and Michelle (24). My daughter has vWD type 1 and Factor V Leiden. My son Jesse has Factor V Leiden and a rare bleeding disorder. About a year ago when the […]

Infusing Love: A Changing World

June 10, 2021

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 […]

U.S. Blood Donations are Safe Under Current COVID-19 Screening Guidelines

June 3, 2021

Read original news release from the National Institutes of Health: U.S. Blood Donations are Safe Under Current COVID-19 Screening Guidelines A new study by researchers at the National Institutes of Health and their colleagues has found that SARS-CoV-2, the virus that causes COVID-19, does not appear to pose a threat to the safety of the […]

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 […]

What to Expect when Participating in Clinical Trials

May 27, 2021

As the market for new treatments for the bleeding disorders community continues to grow, more clinical trials are open to patients and their families than ever before. While participation in these trials is important to medical and scientific advancement, not all clinical trials are right for every patient. In this session, hear from the perspective […]

Infusing Love: Too Blessed to be Stressed

May 26, 2021

  鈥淚 had a lot of anxiety that I was sick and that people were placing fault or blame on me.鈥 鈥 Mily, hemophilia mom Winter can be a beast in New Jersey.聽Taking a moment to admire the beauty of snow calms me.聽However, it is crystal clear that some things do not calm us, and […]

Dear Addy: Healthcare Costs

May 24, 2021

Dear Addy, I heard that a new law was passed that may lower my costs for health insurance. How can I learn more? Sincerely, Frugal Fran  

BioMarin: Clinical Development Program Update

May 21, 2021

Update for Hemophilia Associations BioMarin is pleased to update the community regarding our gene therapy clinical trial program in hemophilia A. BioMarin鈥檚 investigational gene therapy for hemophilia A has not been approved for use; it is in ongoing clinical trials evaluating its safety and efficacy. BioMarin Hemophilia Update For Patient Associations View PDF | Download […]

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, […]

Infusing Love: Accepting the Challenge

May 12, 2021

This blog was originally written in Spanish. To read in Spanish, select “Spanish” in Google Translate:聽 I am the mother of a 15-year-old girl, Yanira, with a rare bleeding disorder, severe factor V deficiency. Remembering how the process was to detect her condition and diagnosis reminds me of the distinguished courage she has had since […]

Patient Groups Praise Administration鈥檚 Action to Preserve Protections Against Discrimination for LGBTQ Patients

May 11, 2021

Washington, D.C.鈥擬ay 10, 2021鈥擬ore than a dozen patient groups representing millions of Americans with serious and chronic health conditions are praising the Biden administration鈥檚 action to preserve protections in the Affordable Care Act (ACA) for lesbian, gay, bisexual, transgender and queer (LGBTQ) patients receiving health care services. The groups filed an amicus brief in a […]

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 […]

CSL Behring Announces Closing of Global Commercialization and License Agreement with uniQure for etranacogene dezaparvovec

May 7, 2021

Read the full press release from CSL Behring here. Global biotherapeutics leader CSL Behring 聽announced the closing of its global Commercialization and License agreement with uniQure for etranacogene dezaparvovec, a novel gene therapy for the treatment of hemophilia B. Etranacogene dezaparvovec is currently in Phase 3 clinical trials and has been shown聽 to result in […]

uniQure Announces Closing of Commercialization and License Agreement with CSL Behring

May 6, 2021

Read the original press release here uniQure, a leading gene therapy company advancing transformative therapies for patients with severe medical needs, announced that the waiting period under the Hart-Scott-Rodino Antitrust Improvements Act of 1976 for the global licensing agreement with CSL Behring for etranacogene dezaparvovec, an investigational gene therapy for patients with hemophilia B, expired […]

Washington Wire: April 2021

April 30, 2021

States Act to Protect Consumers from Copay Accumulators In a major victory for consumers, Kentucky, Oklahoma, and Arkansas enacted legislation this month to prevent health plans from pocketing the copay assistance that provides a critical lifeline to persons with bleeding disorders and other costly conditions. Health plans鈥 use of harmful 鈥渃opay accumulator adjusters鈥 鈥 the […]

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 […]

uniQure Announces FDA Removes Clinical Hold on Hemophilia B Gene Therapy Program

April 26, 2021

Read the full release here. uniQure, a leading gene therapy company advancing transformative therapies for patients with severe medical needs, announced that the U.S. Food and Drug Administration (FDA) has removed the clinical hold on the Company鈥檚 hemophilia B gene therapy program after determining the Company satisfactorily addressed all issues identied by the FDA related […]

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 […]

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