News
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…
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…
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…
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…
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…
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…
New Chief Scientific Officer Joins NHF
Industry News & Research
Kevin Mills, PhD has joined the National Hemophilia Foundation as chief scientific officer. A graduate of University of Colorado Boulder, MIT, and…
uniQure Announces End of Clinical Hold on Hemophilia B Gene Therapy Program
Industry News & Research
Late last year the FDA put a clinical hold on the program in response to a single trial participant who was diagnosed…