News
New Data for Genentech’s Hemlibra (emicizumab-kxwh) Reinforce Safety Profile in People With Hemophilia A
Industry News & Research
Final analysis from the Phase IIIb STASEY study, including data from 193 people with hemophilia A, further support the benefit/risk profile of…
FDA Places Clinical Hold on Sigilon’s Investigational Hemophilia Therapy
Industry News & Research
Sigilon’s cell-based therapy is designed to carry significant amounts of synthetic DNA material to elicit the production of factor VIII in individuals…
Learn More About Shared Decision Making in Hemophilia
Health and Well Being
Shared decision making (SDM) in hemophilia embraces a “patient-as-partner” style for a truly reciprocal relationship. Learn more about both the process and…
NHF Responds to SCOTUS: New Affordable Care Act Ruling Benefits Chronic Disease Patients
Advocacy & Legislation
Dr. Valentino: “Today’s decision protects members of the inheritable blood disorder community, as well as others” Today, the United States Supreme Court…
New Article Offers Scientific Overview of AAV Vectors and Hemophilia Gene Therapy
Industry News & Research
Read about some of the primary considerations relevant to investigational hemophilia gene therapies that employ adeno-associated viral (AAV) vectors. Source: National Hemophilia…
Wisconsin State Journal: Don’t Let Insurers Undermine Copay Help for Wisconsin Patients
Advocacy & Legislation, Industry News & Research
by: Sen. André Jacque and Rep. Paul Tittl | April 17, 2021 The health and economic impacts of the ongoing pandemic have…
The Unite for Bleeding Disorders Walk is September 25! Learn More and Register Today!
GLHF News
The 2021 Unite for Bleeding Disorders Walk is just three months away! We are so excited to see all of you this…
Madison’s Best Bloody 2021 is Cancelled. So, Be Ready for Tastings in 2022!
GLHF News
We are sad to announce that due to the current situation in Madison, we are cancelling this year’s Madison’s Best Bloody. Restaurants…
Camp Klotty Pine Registration Opens Soon!
GLHF News
Join us, August 9 – 13, 2021, as we head back to Camp Klotty Pine for a very special hybrid version of…
NHF’s Bleeding Disorders Conference, August 25 – 28, 2021!
Industry News & Research
NHF’s Annual Bleeding Disorders Conference (BDC) is their signature event and highlights their commitment to education. Leading community members and experts on…
A Message from NHF President and CEO Leonard A. Valentino, M.D. Regarding the Fight Against Racism
Health and Well Being, Industry News & Research
The verdict is an important and significant step forward in the fight against racism, and the violence that it brings to our…
WFH: Specific Risks of COVID-19 to the Bleeding Disorders Community
COVID-19, Industry News & Research
The COVID-19 Task Force of the World Federation of Hemophilia (WFH) has released a statement on risks of acquiring COVID-19 disease and…
BioMarin Presents Positive Safety and Efficacy Data for their Hemophilia A Gene Therapy
Industry News & Research
These data were presented by BioMarin at the American Society of Gene & Cell Therapy Virtual Meeting, which was held May 11-14,…
Gene Therapy Trial Data Suggests Efficacy in the Presence of Antibodies
Industry News & Research
The recent American Society of Gene & Cell Therapy (ASGCT) Virtual Meeting featured updates from the phase III HOPE-B clinical trial of…
NHF Marks the 40th Anniversary of the HIV Epidemic
Industry News & Research, Living with a Bleeding Disorder
June 3, 2021 – Statement from Nathan Schaefer, Vice President of Public Policy, National Hemophilia Foundation This June marks a painful anniversary…
June is Joint Health Month!
Health and Well Being, Living with a Bleeding Disorder
This June learn what your joints want, what they need, and how to help them keep you going. Read more. Source: National…
NHF Compiles List of 2021 Scholarships! Apply Today!
Health and Well Being, Industry News & Research
Time for an important reminder – “Scholarship season” is now in full swing! NHF’s information service, HANDI, compiles an annual online list…
National Patient & Caregiver Survey Shows that COVID-19 Has Exacerbated Treatment Affordability Challenges & Health Inequities for Vulnerable Americans
COVID-19
Many patients across the country – including those in vulnerable and underserved communities – are experiencing challenges in affording and accessing necessary…
Video: Diagnostic Challenges and New VWD Guidelines
Industry News & Research, Living with a Bleeding Disorder
In this video, Robert Sidonio Jr., M.D., discusses the new von Willebrand Disease (VWD) Guidelines and the most significant changes that healthcare…
NHF Celebrates Women’s Health Month with Series of Webinars Critical to Women and Bleeding Disorders
Health and Well Being, Industry News & Research
We are marking women’s health month with a series of webinars that focus on critical issues for women with bleeding disorders. Our…
Health and Wellness Update from Dr. Leonard Valentino About Vaccines, Hesitancy and Understanding VITT
COVID-19, Health and Well Being
COVID-19 and the pandemic continue to dominate the news cycle for most Americans, although many of us would like to think about…
Take the National HTC Patient Satisfaction Survey
Industry News & Research
This national survey is designed to assess patient demographics, their satisfaction with the HTC’s core treatment team, its services, and care processes….
Study Looks at Neuraxial Anesthesia and Postpartum Complications in Hemophilia
Industry News & Research
Neuraxial anesthesia, a focus of this study, refers to the administration of local anesthetics and analgesia to targeted locations in the spinal…
Gene Therapy Licensing Agreement Between uniQure and CSL Now in Effect
Industry News & Research
The commercialization and licensing agreement between the two companies went into effect on May 6th. May 7, 2021 uniQure recently announced that…