News
Living with Bleeding Disorders in the Time of COVID
COVID-19, Living with a Bleeding Disorder
by: Sari Harrar Pandemic stories of strength, perseverance and resiliency from three members of the bleeding disorders community. The COVID-19 pandemic has…
TARPA-H Overview
Industry News & Research
President Biden has called for the creation of a new $6.5 billion research institute, the Advanced Research Projects Agency for Health (ARPA-H),…
Four Decades of HIV
Health and Well Being, Industry News & Research, Living with a Bleeding Disorder
This past June marked a significant milestone for the bleeding disorders community. Forty years ago, on June 5, 1981, the CDC first…
COVID-19: Health and Wellness Update from NHF’s Dr. Leonard Valentino
COVID-19, Industry News & Research
The cautious optimism of May and June with regards to emerging from the pandemic has shifted as we are witnessing a resurgence…
Spark Provides Trial Updates for Investigational Gene Therapy SPK-8011
Industry News & Research
SPK-8011 is Spark Therapeutics’ investigational gene therapy candidate for hemophilia A. Spark Therapeutics recently announced updates from an ongoing phase 1/2 clinical…
New Descriptive Study Looks at Bleeding Disorder Camps
Industry News & Research
The study included a number of notable findings relevant to the participation of healthcare providers in bleeding disorder camps (BDCs), adherence to…
NHF Responds to New CMS Guidance
Industry News & Research
New guidance from the U.S. Department of Health and Human Services encourages states to educate eligible immigrants about Medicaid coverage. In a…
BioMarin Hemophilia A Clinical Development Program: An Update for the Hemophilia Community
Industry News & Research
BioMarin is pleased to update the community regarding our ongoing gene therapy clinical trial program in hemophilia A. BioMarin’s investigational gene therapy…
Review Your Health Coverage: Recent Federal Law Lowers Costs, Opens Up New Options
Advocacy & Legislation, Industry News & Research
The American Rescue Plan (ARP), signed into law on March 11, 2021, provides new opportunities to get health insurance coverage, and/or to…
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…