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Getting WIRED with Research During a Pandemic

September 28, 2021

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 […]

Film School: Sushant Sharma Bhattarai aims to educate people about hemophilia through documentaries

September 28, 2021

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 […]

HFA Offers Mental Health First Aid Training

September 28, 2021

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 […]

HFA Hosts Dateline Live: Annual Product Guide Brought to Life

September 28, 2021

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 […]

HFA Recognized for its Commitment to Mental Health

September 28, 2021

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 […]

Letter from the Chair

September 28, 2021

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 […]

HFA Launches Young Adult Podcast

September 27, 2021

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, […]

Welcome Policy and Government Relations Interns

September 27, 2021

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 […]

HFA Launches Mental Health Courses

August 10, 2021

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 […]

A Letter from the Board Chair

August 10, 2021

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 […]

It’s Ok to Be Sad

August 9, 2021

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 […]

Ryan Seeley Shares How He Copes with Mental Health Issues

August 2, 2021

By Melanie Padgett Powers, Managing Editor Ryan Seeley, of Orchard Park, New York, has dealt with mental health issues for most of his life. About 10 years ago, Seeley, now 52, was forced to retire from the nursing career he loved and go on disability. He has severe hemophilia A and multiple chronic illnesses, including […]

HFA Focuses on Mental Health & Wellness in 2021

August 2, 2021

By Ann LeWalk, MA, HFA Vice President of Education聽 In the best of times, people with bleeding disorders are at a greater risk of depression. However, during the COVID-19 pandemic, the isolating effects of a chronic disorder, coupled with the forced social distancing, has only magnified mental health issues in the bleeding disorders community.聽 Recognizing […]

How is Gene Transfer Therapy Research Designed to Work?

August 2, 2021

Provided by and printed with permission by BioMarin It鈥檚 not magic鈥攊t鈥檚 science in progress. Many gene therapies are under investigation and some have been approved for use for conditions other than hemophilia A or B. The risks and benefits of each gene therapy are evaluated independently, and if a clinical trial for a particular gene […]

Limits on Copay Assistance Can Threaten Families鈥 Financial Security

August 2, 2021

By HFA Policy and Advocacy Team, with assistance from an actuarial professional For many in the bleeding disorders community, drug manufacturer copay assistance programs are a source of financial relief and the sole protection against perpetually high out-of-pocket health care costs. Unfortunately, health insurers, citing the need to curb medical inflation, are increasingly refusing to […]

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 […]

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 […]

I Know Me Best

September 23, 2020

A visit to an unfamiliar hospital reminds patient of the importance of self-advocacy BY MICHAEL BISHOP, STAFF WRITER Self-advocacy is the quintessential and necessary skill for people with hemophilia. It鈥檚 something I鈥檝e been taught my entire life, and it鈥檚 something on which Hemophilia Federation of America frequently focuses its education. It鈥檚 incredibly important, and I鈥檝e […]

Best One Yet: Bleeding disorders community member creates successful annual fundraising event

September 23, 2020

BY SHAWN NEASE, GUEST WRITER You have got to be kidding me! Are you sure that is just for this year?鈥 That was me after wrapping up this year鈥檚 Delves for Donors fundraising event and checking in with the hosting store owner for a rough total of how much was raised this year. A little […]

HFA鈥檚 Summer Internship Goes Virtual

September 23, 2020

Hemophilia Federation of America has welcomed two advocacy interns for the summer of 2020, but in a new and unique way. For many years, HFA鈥檚 advocacy interns spent 10 weeks of their summer living in Washington, D.C., where the HFA office is located, engaged in hands-on activities related to policy and advocacy. But with travel […]

The Art and Science of Goal Setting and Achieving

September 23, 2020

HFA board member shares valuable tips to accomplish more BY CLYDE J.R. BRAWNER, MBA, HFA BOARD OF DIRECTORS Goal setting is often the foundation of success. We set goals for our education, our finances, our health, our careers plus many other important milestones in our lives. We often think about accomplishing our goals, rarely understanding […]

A Little Peace of Mind: HFA develops relief fund for bleeding disorders community directly impacted by COVID-19

September 23, 2020

BY EMILY ROUSH-BOBOLZ, STAFF WRITER When a pandemic hit the United States in early 2020, no one knew what to expect. Schools and businesses began to close, and people were being laid off from their jobs, but it wasn鈥檛 yet clear how the bleeding disorders community would be directly impacted. It was clear, however, that […]

COVID-19 Resources and Information for the Bleeding Disorders Community

September 23, 2020

Hemophilia Federation of America quickly responded to the needs of the bleeding disorders community during the coronavirus pandemic by creating a hub of valuable information at www.hemophiliafed.org/covid19. HFA鈥檚 COVID-19 Hub includes: Patient Care and Product Availability For patients and families concerned about access to care and the availability of bleeding disorders products and services during […]

Project CALLS: Creating Alternatives to Limiting or Lacking Services

September 23, 2020

Hemophilia Federation of America created Project CALLS to collect data and personal stories of how techniques employed by insurance companies create barriers to care for patients. In 2020, HFA will highlight stories of CALLS respondents. In addition to highlighting their stories, the data collected from more than 200 submissions since 2015 offers a baseline view […]


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