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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 […]

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 […]

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 […]

Infusing Love: From My Son鈥檚 Point of View

February 10, 2021

It鈥檚 been a year since the first case of COVID-19 was reported in the United States. The ever-evolving coronavirus situation can be a bit intimidating. With social distancing and quarantine are becoming frequent vocabulary words in our everyday conversations. The whole thing can feel downright overwhelming. Answer me this question鈥hen did feeling exhausted and overwhelmed […]

Dear Addy: Vexxed about Vaccines

February 4, 2021

Hemophilia Federation of America is excited to now offer video responses to Dear Addy questions. We recently had a community member ask for guidance on the COVID-19 vaccine. Kimberly Ramseur, HFA鈥檚 Senior Policy Manager, provides some more information.

HFA Statement of Unity

January 8, 2021

Hemophilia Federation of America is appalled by the recent violence at the United States Capitol. Each time our community has visited the Capitol to advocate on behalf of bleeding disorders, it has been an honor and a privilege to be a part of the democratic process set forth in the Constitution. However, the events showed […]

Infusing Love: A Pillar of Strength

January 6, 2021

The staff of Hemophilia Federation of America and Infusing Love: A Mom’s View bloggers extend condolences to Maryann on the death of her son, Max. There are times as a hemophilia mom that you feel as though you can handle anything, like you could take on the world and make it a better place.聽Then there […]

Sanofi to Resume Dosing in Fitusiran Clinical Studies in the U.S.

December 11, 2020

The following is a press release from Sanofi. Read the press release in its entirety here. Sanofi will resume fitusiran dosing in ongoing U.S. adolescent and adult clinical studies. Fitusiran is an investigational, small interference RNA therapy in development for the treatment of people with hemophilia A or B, with or without inhibitors. Sanofi鈥檚 first […]

Pfizer and Sangamo Announce Updated Results in Hemophilia A Gene Therapy

December 10, 2020

The following is an excerpt from a press release from Pfizer. Read the full press release here. Pfizer Inc. and Sangamo Therapeutics Inc., a genomic medicines company, announced updated follow-up data from the Phase 1/2 Alta study of giroctocogene fitelparvovec (SB-525 or PF-07055480), an investigational gene therapy for patients with severe hemophilia A. These data […]

HFA Expresses Gratitude to Bleeding Disorders Community

November 25, 2020

With the pandemic and economic crisis still very present in our lives, a message of gratitude could be seen as a clich茅. Instead, they are at the core of my emotions as I tell you how thankful I am for this community. It is with sincerity that I wish you a happy Thanksgiving and express […]


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