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Important Update Regarding Availability of Stimate

September 9, 2021

Important Update Regarding Availability of Stimate Recently, CSL Behring announced that the company has chosen to end their distribution agreement with Ferring Pharmaceuticals for STIMATE庐 nasal spray, effectively thereby removing this medication as a valuable treatment option for patients with von Willebrand Disease (VWD) and mild hemophilia A. Background For over a year now, STIMATE庐 […]

National Hemophilia Foundation and Hemophilia Federation of America Partner for 鈥淭ogether Project鈥

September 8, 2021

FOR IMMEDIATE RELEASE聽 Media Contacts Ilana Ostrin, National Hemophilia Foundation iostrin@hemophilia.org 212-328-3769 Meghan Lawton, Hemophilia Federation of America m.lawton@hemophiliafed.org 607-423-4496 National Hemophilia Foundation and Hemophilia Federation of America Partner for 鈥淭ogether Project鈥 New partnership kicks off with a focus on mental health New York, NY/Washington, D.C.鈥 Today, the National Hemophilia Foundation (NHF) joins the Hemophilia […]

Washington Wire: August 2021

August 31, 2021

With Medicaid much in the news in August, it seemed timely to offer a refresher on how Medicaid is structured, and why it鈥檚 important to many in the bleeding disorders community. Medicaid is a public health insurance program for low-income individuals, families, seniors, and people with disabilities. States set up and run their own Medicaid […]

September is Suicide Prevention Awareness Month

August 31, 2021

September is Suicide Prevention Awareness Month HFA has established a partnership with the American Foundation for Suicide Prevention. There are resources available at the local level and outreach being done in September in particular to address the increasing levels of suicide across the country. Additional Resources Information on聽how to reach a local chapter Information on聽Talk […]

HFA’s Commitment to Anti-Racism

August 24, 2021

Hemophilia Federation of America acknowledges that our staff and the bleeding disorders community hold many identities and experience oppression and biases, including the very real impact of systemic racism and racial prejudice. As an organization, we reject all forms of racism and vow to uphold an anti-racist culture. We recognize that it requires ongoing examination […]

Back to School Checklist for Parents

August 23, 2021

Summer鈥檚 wrapping up and many children, like yours, are preparing to return to school, or to go to school for the first time. If the thought of your child going back to school fills you with dread, you are not alone. It is normal to feel stressed as you assist your child with their transition […]

Young Adult Podcast: Adulting with a Bleeding Disorder: College

August 19, 2021

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 […]

Back To College Check List

August 16, 2021

Summer鈥檚 wrapping up, and many young adults, like you, are preparing to return to their college campus, or to step foot on campus for the first time. If the thought of going back to school fills you with dread, you鈥檙e not alone. It鈥檚 normal to feel stressed or lonely sometimes, especially as you transition away […]

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 […]

Career Conversations: A Helping Forward Webinar

August 10, 2021

August 24 | 8:00 pm ET Have you ever faced a barrier to employment because of your bleeding disorder or financial issues? You’re not alone! Join us as we speak to community members who are overcoming barriers and achieving their career goals. We鈥檒l also recognize recipients of HFA’s Job Readiness Grants and share how you […]

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 […]

2021 Virtual Young Adult Advocacy Summit

August 5, 2021

Every year, HFA holds an inspiring and fun Young Adult Advocacy Summit (YAAS)聽to introduce young adults to legislative and personal advocacy in a safe and supportive manner with hands-on training and peer support. Our outreach to legislative offices on Capitol Hill and federal agencies empowers participants to apply their knowledge and experience in their communities. […]

Infusing Love: A Breakfast with Love

August 5, 2021

I realized that cooking with care and love for my family did make a difference and that they noticed it every day. 鈥擜na, hemophilia mom On a typical day, mornings include waking up, getting out of bed, drinking coffee, taking a bath and starting your daily routine. The kids are getting ready for school, and […]

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 […]

Washington Wire: July 2021

July 30, 2021

Administration Issues First Rule on the No Surprises Act On July 1, the Administration issued a first set of rules implementing the聽No Surprises Act. The statute and rules target the all-too-common problem of surprise or balance billing. Surprise billing can happen when a patient inadvertently gets services from an out-of-network (OON) health care provider. Maybe […]

State of the States: Spring/Summer 2021

July 26, 2021

  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), […]

Intern Introspective: Updates from our 2021 Intern Class

July 22, 2021

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 […]

Intern Introspective: Updates from our 2021 Intern Class

July 16, 2021

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 […]

HFA Symposium 2021: Call for Research Poster Abstracts

July 15, 2021

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 […]

Sigilon Therapeutics Announces Clinical Hold on SIG-001 Phase 1/2 Study in Hemophilia A

July 12, 2021

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 […]

All Out Break Out: Family Game Night

July 12, 2021

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 […]

Intern Introspective: Meet our 2021 Policy & Government Relations Interns

July 8, 2021

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 […]

Washington Wire: June 2021

June 30, 2021

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 […]

Infusing Love: We Are All Family

June 24, 2021

  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 […]

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 […]

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 […]


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