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News & Perspectives

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

April 9, 2021

Deadline to Apply: Friday, April 30 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, Scrum Master to Salesforce Administrator, coder to Certified […]

Mental Health Resources

April 8, 2021

Save This Page With growing instances of mental health emergencies, it is important to know the warning signs of a mental health crisis in ourselves and our loved ones. This helpful handout provides valuable information on spotting the signs and what to say (and not say) when someone needs immediate help. Quick Links to Mental […]

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  

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 Hosts National Council for Behavioral Health’s Mental Health First Aid Training

March 30, 2021

Hemophilia Federation of America (HFA) is pleased to offer free Mental Health First Aid training through an internationally renowned program by the National Council for Behavioral Health as part of HFA’s 2021 Mental Health and Wellness Initiative. HFA will be offering four trainings throughout 2021 for bleeding disorders community members ages 18 and over. The […]

uniQure Releases Findings in Hemophilia B Gene Therapy Program

March 29, 2021

The following is an excerpt from a press release from uniQure. Read the full press release here. uniQure, a leading gene therapy company advancing transformative therapies for patients with severe medical needs, announced the results of a comprehensive investigation into the case of hepatocellular carcinoma (HCC) diagnosed in one patient in the HOPE-B pivotal trial […]

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 […]

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 […]

FDA Advises Discontinued Use and Expanded Recall of ChloraPrep 3 mL Applicators

March 22, 2021

The following is information from the U.S. Food and Drug Administration. Read the full press release here. The U.S. Food and Drug Administration (FDA) advises health care professionals not to use ChloraPrep 3 mL applicators manufactured by Becton, Dickinson and Company (BD) due to microbial contamination risks. The drug was distributed globally and is labeled […]

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 […]

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 […]

BioMarin Provides Update to Gene Therapy Clinical Trial Program in Hemophilia A

March 16, 2021

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. Clinical Trial Overview BioMarin鈥檚 valoctocogene roxaparvovec, is currently being studied in adults with severe […]

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 […]

Washington Wire: February 2021

February 26, 2021

Responding to the ongoing pandemic, the federal government has opened a special enrollment period (SEP) in the Healthcare.gov insurance marketplaces. This enrollment opportunity will run from Feb. 15聽to May 15聽in the 36 states that use the Healthcare.gov enrollment platform (most of the remaining states have already announced that they, too, will open a new 2021 […]

HFA and 14 Other Patient, Disability and Health Care Organizations Urge U.S. Supreme Court to Protect Access to Medicaid and Rule Against Work and Community Engagement Requirements

February 25, 2021

Lower Courts Have Ruled Work Requirements Would Reduce, Rather than Expand, Access to Health Care Fifteen groups representing patients, people with disabilities and health care professionals filed an amicus curiae – or friend of the court 鈥 brief today urging the U.S. Supreme Court to protect access to health coverage as it considers the validity […]

Sanofi Presents Amended Protocols in Fitusiran Clinical Studies

February 24, 2021

The following is an excerpt from a press release from Sanofi. Read the full press release here. The amended protocol being implemented for all ongoing adult and adolescent fitusiran clinical studies was presented at the 14th Annual Congress of the European Association for Hemophilia and Allied Disorders (EAHAD). Fitusiran is an investigational, subcutaneously administered small […]

Infusing Love: El Deporte Para Su Salud

February 23, 2021

Como saben soy mama de un ni帽o de 11 a帽os con hemofilia. Cuando mi ni帽o fu茅 creciendo empez贸 a aumentar de peso y en ocasiones presentaba dolores en sus tobillos. Yo como mam谩 s煤per protectora, (s铆 lo acepto, tengo que trabajar conmigo misma para no transmitirle miedo a mi ni帽o) no consideraba ning煤n deporte como […]

Hemophilia Federation of America Announces Annual Patient-Centered Symposium Will be Virtual in 2021

February 19, 2021

As the nation continues to navigate concerns with travel, safety and vaccinations with COVID-19, Hemophilia Federation of America announces its annual patient-centered education Symposium will be hosted virtually again in 2021. Originally set to take place in San Antonio in October of 2021, the annual conference is being reimagined for a virtual event, and dates […]

Shining a Light on Healing and Mental Health for Black Community Members

February 18, 2021

During Black History Month, Hemophilia Federation of American would like to shine a light on Black healing and mental health in the bleeding disorders community. In addition to the emotional impacts of chronic illness and living in a pandemic, Black community members may also be experiencing layers of individual and intergenerational trauma from racism. There […]

Octapharma Announces Final Data from Study on the Immunogenicity in Previously Untreated Patients with Severe Hemophilia A

February 18, 2021

The following is an excerpt from a press release from Octapharma. Read the full press release here. Octapharma announced the final results from the NuProtect study on the immunogenicity of Nuwiq庐 in previously untreated patients with severe hamophilia A have been published in the medical journal Thrombosis and Haemostasis (Liesner RJ et al. 鈥淪imoctocog Alfa […]

Dear Addy: Diversity and Inclusion

February 18, 2021

Hemophilia Federation of America is excited to now offer video responses to Dear Addy questions. While the United States grapples with issues of聽diversity, equity and inclusion, and improvements have been made throughout the country, a community member inquired what HFA is doing to address diversity, equity and inclusion. Senior Manager of Policy and Advocacy, Kimberly […]

Hemophilia Federation of America Survey Shows Impact of Pandemic on Bleeding Disorders Community

February 18, 2021

In the spring of 2020, the usual way of life for the entire nation changed when the COVID-19 pandemic hit the United States. While Hemophilia Federation of America quickly responded by providing resources and information to the bleeding disorders community, the organization also wanted to better understand how the community was affected. HFA conducted an […]


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