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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 Offers Grants for Patients to Learn Job Skills, Gain Certification

February 19, 2021

What鈥檚 standing between you and your career goals? Hemophilia Federation of America is awarding Job Readiness Grants to help the bleeding disorders community pay for technical training and certification to support their career goals. Whether you want to secure a better paying position, find a new job that鈥檚 easier on joints or transition to the […]

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 […]

Infusing Love: Boys to Men

November 25, 2020

  I have been 鈥淚nfusing Love鈥 into my son Marques for the past 18 years! I have not only been infusing him with factor, so his blood clotting levels are normal, but I have tried to infuse him with the education he needs to live a long life with hemophilia. I pray! As hemophilia moms, […]

Okay, So What Can We Do?

November 3, 2020

“Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has.” -Margaret Mead To find an example of the type of group Margaret Mead speaks about in her famous quote, look no further than our bleeding disorders community. From the 1990s with the passage […]

Infusing Love: The Other Side Effects

October 21, 2020

There are new bleeding disorder side effects cropping up all the time. By side effects, I mean the extraneous things we have to manage such as insurance, genotyping and product choice. In a time before all the advancements, a side effect was learning to be an IV nurse and find a vein on a toddler,聽 […]

Dear Addy: Ready to Vote

October 21, 2020

Dear Addy, It鈥檚 been an extremely stressful year due to COVID-19. Elections are coming up fast and I鈥檓 not sure what steps I need to take to vote. Any help? Ready To Vote Dear Ready, I agree this year has presented a lot of new challenges for everyone and learning new ways to cope. As […]

HFA, NHF, Hemophilia Alliance Request Additional Information Regarding Stimate Recall

September 14, 2020

Hemophilia Federation of America and the National Hemophilia Foundation continue to follow up on issues arising from the recent recall of Stimate (desmopressin) nasal spray, which is manufactured by Ferring Pharmaceuticals and distributed in the United States by CSL Behring. On September 3, HFA, NHF and the Hemophilia Alliance sent a new joint letter to […]

2020 Symposium Final Night Event Performance

August 29, 2020

A huge thank you to the performers who made HFA’s 2020 Symposium Final Night Event amazing! Learn more about these talented performers from around the world: Ben Seidman聽|聽Magician聽鈥 Penn & Teller’s Fool Us, Mindfreak, Magic Outlaws William Wei-Lang Lin聽|聽Diabolo 鈥 Cirque du Soleil 鈥婼teve Langley | Soap聽Bubble Manipulation聽鈥 Guinness World Records Michael Karas | Juggler聽鈥 […]

Infusing Love: We Are Strong!

August 4, 2020

Strong. Every January I reflect on the year to come. I chose a word based on something personal, either to myself or to our family. This year I chose the word: Strong. I chose that word specific to my goals for the year. I鈥檝e been a consistent runner since 2015. In fact, I love it […]

uniQure Announces License Agreement with CSL Behring to Commercialize Hemophilia B Gene Therapy

June 25, 2020

The following is an excerpt from a press release from uniQure. Read the press release in its entirety here. uniQure N.V., a gene therapy company advancing transformative therapies for patients with severe medical needs, announced that uniQure and CSL Behring have entered into a licensing agreement providing CSL Behring with exclusive global rights to etranacogene […]

Pfizer and Sangamo Announces Updated Phase Result

June 18, 2020

The following is an excerpt from a press release from Pfizer. Read the press release in its entirety here. Pfizer Inc. and Sangamo Therapeutics Inc. 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. All five patients with […]

Sanofi and Sobi Donate up to 500 million Additional IUs of Clotting Factor

June 15, 2020

The following is an excerpt from a press release from Sanofi. Read the press release in its entirety here. Sanofi and Sobi™, together with the World Federation of Hemophilia (WFH) and WFH USA, announced an extension of their support of the WFH Humanitarian Aid Program with an additional donation of up to 500 million IUs […]

Infusing Love: Prepared But Not Prepared

April 15, 2020

  As bleeding disorder parents, we are planners. We love to know what, how and when something is headed our way, and we will be prepared. We have been disaster relief preparing since day one. We have hospital/ER bags ready to go at a moment鈥檚 notice. Even during this age of smart phones, we have […]

Infusing Love: Sentirse Empoderado

April 1, 2020

Saludos a todas las madres que, como yo, tienen en su vida y en sus corazones una persona muy especial que llena sus d铆as de felicidad. Les contar茅 un poquito sobre mi vida. Crec铆 en una familia donde la hemofilia estaba en nuestro diario vivir. Esto me hizo ver la condici贸n como algo normal. Mi […]

Diplomat Statement on COVID-19

March 27, 2020

The following is a statement provided by Diplomat Specialty Infusion Group. “Living and working through a global pandemic 鈥 the coronavirus (COVID-19) 鈥 is an event none of us has experienced in our lifetime. As the situation continues to evolve, we want you to know that your Diplomat Specialty Infusion Group team will be here […]

Hemlibra Supply and Coronavirus Update

March 21, 2020

The following is a press release from Genentech. “The World Health Organization has declared the COVID-19 (coronavirus) outbreak a global pandemic. We extend our heartfelt sympathies to everyone who has lost loved ones, to patients and healthcare professionals battling this devastating outbreak. With multiple countries implementing measures to slow the spread of the virus, based […]

Infusing Love: Sharing Our Hemophilia

March 11, 2020

I will never compare my bleeding disorder to my son鈥檚 鈥 I will however share it with him. It wasn鈥檛 until I had a pretty significant brain bleed that I even paid attention to the fact that I have a bleeding disorder, that wasn鈥檛 until I was in my fifties and my son was an […]

Bayer Statement on Availability of Factor VIII Products Amid 2019-nCoV (Novel Coronavirus)

March 5, 2020

Bayer has issued the following statement regarding the supply and availability of Bayer’s Factor VIII/Hemophilia A products in the wake of the聽2019-nCoV (novel coronavirus) outbreak:


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