Hemophilia Federation of America is a national nonprofit organization that assists, educates and advocates for the bleeding disorders community.
Update on ACA lawsuit The death of eminent Supreme Court justice Ruth Bader Ginsburg on September 18th brought renewed attention to the fate of the Affordable Care Act. As previously reported, a lawsuit challenging the constitutionality of the ACA (California v. Texas) is pending in the Supreme Court. Because Justice Ginsburg was considered a likely […]
Mi relaci贸n con la hemofilia empez贸 muy temprano en mi vida. Conservo muchos recuerdos, episodios que aun hoy d铆a los tengo grabados en mi memoria. Me llega la imagen de mi padre (que ten铆a hemofilia severa A) acostado en una cama o sentado en una silla teniendo mucho dolor, sin poder caminar y a veces […]
Policy and advocacy work is increasingly important at the state level. In an effort to keep you informed about the work happening on the ground at the local level, HFA is debuting a quarterly update, “State of the States.” Stay up-to-date and read about the work happening close to you! The COVID emergency has upended […]
As a part of the HFA Policy and Government Education internship, the interns are tasked with creating a final capstone project encompassing what they have learned, culminating in the creation of advocacy and policy programming that is aimed at a young adult audience. The capstone is fully intern-driven, from concept to execution, with support […]
CSL Behring issued the following statement to patient advocacy groups: “CSL Behring is focused on delivering breakthrough therapies to improve patients鈥 lives and meet the changing needs of our patients. Since CSL Behring鈥檚 introduction of MONONINE庐 Coagulation Factor IX (Human) in 1992, advancements have been made for the treatment of Hemophilia B.聽 Over time, patients […]
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 […]
By Will Hubbert As sad as it is to write, my time as an intern at HFA has come to an end. I鈥檝e loved my time here, so I want to use this last reflection as an opportunity to thank my mentors and recommend the program. HFA鈥檚 internship is a truly amazing experience, and […]
On September 1, 2020, HFA and NHF learned that Mylan N.V. is conducting a voluntary nationwide recall of聽 four lots of Tranexamic Acid Injection, USP 1000 mg/10 mL, packaged in cartons of 10 single-dose 10 mL vials. Tranexamic acid injection is indicated in patients with hemophilia for short term use to reduce or prevent hemorrhage […]
Policy and advocacy sessions sparked robust discussions at HFA鈥檚 recently concluded 2020 Symposium! Thank you to all who attended 鈥 it was wonderful to 鈥渟ee鈥 you at our virtual event. For those who couldn鈥檛 join us in real time, you can still view the recorded sessions on your own schedule for the next few months […]
The following is an excerpt from an update from Genentech. Read the update in its entirety here. Genentech has provided a statement surrounding an August 27, 2020 US Federal Circuit Court of Appeals ruling which 聽reverses a previous ruling by the US District Court. In December 2018, the US District Court issued a patent interpretation […]
The following is an excerpt from a statement from Genentech. Read the statement in its entirety here. Genentech has announced an update on measures that are being taken in relation to the translucent particles that were identified in Hemlibra庐 (emicizumab-kxwh) in 2019 during a routine examination of product batches as part of quality assurance processes. […]
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 […]
At its Aug. 24, 2020 annual meeting, the Hemophilia Federation of America Board of Directors approved its most recent officers to serve on the executive committee. The board of directors approved the following individuals as officers: Allie Ritcey, Chair Steve Long, Vice Chair Gillian Schultz, Secretary Clyde (J.R.) Brawner, Treasurer Carletha Gates, Member at Large […]
The following is an excerpt from an update from Takeda. Read the update in its entirety here. Takeda recently informed HFA of it’s decision聽to suspend screening and further enrollment in聽the TAK-754 and TAK-748 clinical studies, effective immediately. TAK-754 is an AAV8 gene therapy for the treatment of hemophilia A currently in Phase 1/2 clinical聽development, while […]
Click Below to Translate Page to Spanish. Today BioMarin announced that the U.S. Food and Drug Administration has issued a letter indicating that BioMarin鈥檚 investigational gene therapy for severe hemophilia A is not ready for approval in its present form. BioMarin says the FDA has asked for two years of follow-up data showing evidence of […]
Dear Addy, This will be my first year going off to college and I鈥檓 a little bit nervous about it. The prospect of traveling hundreds of miles away from home and my HTC was already daunting, and COVID has only made this big transition feel even bigger. What can I do to make […]
Ferring Pharmaceuticals announced it was extending the recall of Stimate (desmopressin) to the consumer/user level. Stimate is manufactured by Ferring Pharmaceuticals Inc. and is distributed and sold in the United States by CSL Behring. This marks an expansion of Ferring鈥檚 initial July 2020 plans to conduct a narrower pharmacy-level recall. Under a consumer-level recall, people […]
My son, Michael, has severe hemophilia B. He is soon to be 28 years old. Wow! That time flew by! I remember the day we found out he had hemophilia. He was 11 days old. We were shocked, scared and ready to take on this challenge life had given us.聽 We educated ourselves and our […]
NOTE:聽The recall does not apply to any states in the United States, it only applies to the U.S. territories of Puerto Rico, Guam, U.S. Virgin Islands, Northern Mariana Islands and American Samoa. Click Below to Translate Page to Spanish. BD (Becton, Dickinson and Company), a global medical technology company, announced a voluntary recall on June […]
Click Below to Translate Page to Spanish. On July 21, 2020, Ferring Pharmaceuticals issued a voluntary recall of Stimate (desmopressin) nasal spray due to 鈥渟uperpotency鈥 鈥 in other words, amounts of desmopressin being higher than specified. Stimate is used to treat von Willebrand disease (VWD) and mild hemophilia A. It is licensed and distributed […]
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 […]
Click Below to Translate Page to Spanish. Product recall announced On July 21, CSL Behring and Ferring Pharmaceuticals announced a聽recall聽of multiple lots of Stimate (desmopressin),聽in the United States and in other countries around the world. The recall was prompted by the manufacturer鈥檚 discovery of out-of-specification levels of the active ingredient in the marketed product. This聽announcement […]
It鈥檚 hard to believe, but our summer interns are more than halfway through their time with us this summer. In this blog post Will and Tameelah give you an inside look into an average week in the life of an intern, and in Will鈥檚 words, 鈥渉opefully inspire some intrepid young person to apply for this […]
Attending HFA鈥檚 Symposium has always fascinated me. I have attended a few symposiums with my family: St. Louis, Cleveland, Las Vegas, and San Diego. During symposium, I networked with individuals who were in various fields: social workers, physicians, nurses, physical therapists, and patients.聽 Days were filled with inspirational kickoff and educational breakout sessions. There […]
Click Below to Translate Page to Spanish. On July 21, CSL Behring and Ferring Pharmaceuticals announced the recall of multiple lots of Stimate (desmopressin)聽in the United States, as part of a global recall. This聽troubling聽announcement has raised many questions on the part of national and international patient organizations and community members. Today, HFA and NHF have聽submitted […]
Click Below to Translate Page to Spanish. Late today (July 21, 2020), HFA and NHF learned of a聽pharmacy level聽product recall of聽Stimate (desmopressin)聽nasal spray manufactured by Ferring Pharmaceuticals,聽and聽distributed in the U.S. by CSL Behring. Ferring has prepared a Health Hazard Safety Evaluation, warning that 鈥渢here is a reasonable probability that the use of, or exposure to, […]
Dear Addy, My high school sweetheart and I are in our senior year of college and recently began a conversation about life after school. Are there any resources for us to learn more about starting a family when you know you are a carrier or have a history of bleeding disorders in your family?聽 Signed, […]
We are now four or five months into this very bizarre time of the COVID-19 Pandemic. If you鈥檙e like me, 聽you鈥檙e not getting any more used to this 鈥渘ew normal鈥 but rather more than ever, ready for it to be over. While we may be ready to get back to life the way it […]
Earlier this summer, we introduced you to Will and Tameelah, our summer Policy and Government Education interns. Both young adults have been active in their local bleeding disorders community and are passionate about keeping their peers involved. This week we asked Tameelah and Will to share how they want to make their mark in our […]
You know what I miss? You. I miss you. I miss looking into your eyes, I miss tearing up when I try to explain my struggles and listen to yours. I miss smiling with you when I tell you about my adventures and you tell me yours. I鈥檝e been a part of the bleeding disorder […]
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