Donate

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 […]

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 […]

Intern Introspective: Final Update from our 2021 Class

August 13, 2021

The HFA team welcomed a new group of students to our summer 2021 internship program! They participated in our 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, learning more about hearings and what it means to […]

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 […]

Gilead Warns of Counterfeit HIV Medication Being Distributed in the United States

August 6, 2021

The following is sourced from Gilead. Read the update in its entirety “Gilead Warns of Counterfeit HIV Medication Being Distributed in the United States”. Click to view the original press release. Foster City, Calif., August 5, 2021聽鈥 Gilead Sciences has become aware of tampered and counterfeit versions of its once-daily single tablet HIV treatment regimen […]

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 […]

Infusing Love: 504 Plans

July 28, 2021

Hello, my name is Lupe Torres! I would like to start by thanking everyone for the opportunity to let me share my experience with the 504 plans. First, here is a little bit about me and my family. I live in the city of Las Vegas, and I have three children, two sons and one […]

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 […]

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 […]

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 […]

BioMarin: Clinical Development Program Update

July 2, 2021

BioMarin is pleased to update the community regarding our ongoing gene therapy clinical trial program in hemophilia A. BioMarin’s 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 A Clinical聽Development Program: An Update for the Hemophilia Community View PDF […]

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 […]

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  

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 […]

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 […]

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 […]

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, […]

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 […]

Infusing Love: Too Many Transitions

March 24, 2021

I know this is what we raise our children for 鈥 for them to leave the nest and fly on their own 鈥 I just never knew it was going to be so hard when it actually happened. My son, Nick, who is almost 18, started a Monday, Wednesday, Friday routine of prophylaxis when he […]

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, […]

Infusing Love: Let Them Hurt

March 17, 2021

  Let鈥檚 talk about losing a child. I know, not a feel-good topic, but one I鈥檓 living with right now. The reason I blog, the reason I know why I even know about my own bleeding disorder is because I had a son. I say 鈥渉ad鈥 because he died on Jan. 1, 2021. His name […]

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 […]

Genentech Issues Update to Warning and Precautions Section of Hemlibra Label

March 15, 2021

In Genentech鈥檚 ongoing efforts to transparently communicate with the hemophilia community, they have shared two updates to the Hemlibra label that were requested by the U.S. Food and Drug Administration. These changes, which were accepted and implemented on March 10, 2021, impact the Warnings and Precautions (sections 5.1 and 5.2) and Clinical Pharmacology (section 12.3) […]

Infusing Love: Mental Health is More Than Just a Buzz Phrase

March 10, 2021

Happy 2021 everyone! With this New Year comes a lot of hope and promises. It was a long 2020 with many life changes and stresses. I am the mother of a 28-year-old son, Michael, with severe hemophilia B and inhibitors due to allergic reactions to all factor 9 products. I know that sounds very stressful […]

Children鈥檚 National Hospital Rare Disease Institute and Takeda Partner to Standardize Care for Patients With Rare Diseases

March 10, 2021

The following is an excerpt from a press release from Takeda. Read the press release in its entirety here. Children鈥檚 National Hospital and Takeda Pharmaceutical Company Limited announce the creation of the Rare Disease Clinical Activity Protocols (Rare-CAP) program, which will establish a networked system for the development, dissemination and curation of protocols to help […]

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 […]


Sign up for E-mails, Dateline Magazine, and other ways to stay connected.