News
Takeda Announces Approval of Prophylactic Indication for VWD Therapy
Industry News & Research
Takeda recently announced that the U.S. Food and Drug Administration (FDA) has approved VONVENDI® for routine prophylaxis to reduce the frequency of…
Update from BioMarin Phase 3 Trial
Industry News & Research
BioMarin’s investigational gene therapy for hemophilia A has not been approved for use; clinical trials are ongoing. Please click this link to read…
Remembering Val Bias
GLHF News, Industry News & Research
A Statement from the National Hemophilia Foundation: Like many reading this note, NHF is profoundly heartbroken over the recent passing of Val…
The FDA’s Office of Patient Affairs Shares Highlights from 2021 Programs and Encourages you to Participate in their Upcoming 2022 Activities.
Advocacy & Legislation, COVID-19, Industry News & Research
The United States Food and Drug Administration’s Office of Patient Affairs is sharing recent highlights with the public from 2021 and is…
Sigilon Announces a Priority Shift in Light of Clinical Trial Setbacks
Industry News & Research
The phase 1/2 trial of SIG-001 for hemophilia A has been on an FDA clinical hold since July 2021. Sigilon Therapeutics recently…
New Study Looks at Physical Activity Risk in Patients with Hemophilia A
Industry News & Research, Living with a Bleeding Disorder
This study designed to assess the link between physical activity levels, FVIII infusion, and occurrence of bleeding episodes. Results of a recently…
Remembering Val Bias: A Note from Dr. Glenn Pierce
GLHF News, Industry News & Research
Dr. Glenn Pierce reflects on the passing of former NHF CEO, Val Bias. Val and I first got to know one another…
National Hemophilia Foundation Mourns the Loss of Longtime CEO, Val Bias
GLHF News, Industry News & Research
Former CEO spent decades inspiring the inheritable blood disorders community. NHF is deeply saddened to announce that former NHF CEO and community…
All Copays Count Coalition Statement on Draft 2023 CMS Notice of Benefit and Payment Parameters
Advocacy & Legislation, Industry News & Research
The latest breaking news from the All Copays Count Coalition. In response to additional rulemaking for the Centers for Medicare & Medicaid…
Gene Therapy: Where Do We Go From Here?
Industry News & Research
In this video, Tammuella Chrisentery-Singleton, M.D., Chief of Hematology for the Louisiana Center for Advanced Medicine, gives an overview of gene therapy…
Glanzmann’s Thrombasthenia and Bernard-Soulier Syndrome
GLHF News, Industry News & Research
Here’s what we know about these ultra-rare platelet disorders. Most bleeding disorders are relatively rare. Even the most common bleeding disorder, von…
National Patient & Caregiver Survey Shows that COVID-19 Has Exacerbated Treatment Affordability Challenges & Health Inequities for Vulnerable Americans
COVID-19, Industry News & Research
The National Hemophilia Foundation (NHF) today, in conjunction with the American Kidney Fund (AKF), Arthritis Foundation, and American Autoimmune Related Diseases Association (AARDA), released findings from…
Clinical Study and New Website to Focus on von Willebrand Disease and Pregnancy
Health and Well Being, Industry News & Research, Living with a Bleeding Disorder
The onset of childbirth and the postpartum period are times when women with von Willebrand disease (VWD) are at an increased risk…
uniQure and CSL Behring Announce Primary Endpoint Achieved in HOPE-B Pivotal Trial of Etranacogene Dezaparvovec Gene Therapy in Patients with Hemophilia B
Industry News & Research
Paper Highlights: Largest gene therapy study in hemophilia B achieved primary endpoint of non-inferiority in annualized bleeding rate after stable Factor IX…
Spark Announces Multiyear Data Update for Investigational Gene Therapy
Industry News & Research
This data was drawn from a phase 1/2 clinical trial of SPK-8011, Spark’s investigational gene therapy for hemophilia A. Spark Therapeutics announced…
Pfizer/Sangamo Hemophilia A Gene Therapy Program on Clinical Hold
Industry News & Research
On Tuesday, November 4, the U.S. Food and Drug Administration (FDA) placed the Pfizer/Sangamo hemophilia A gene therapy program, including the pivotal…
New Data Analysis Sheds Light on Bleeding Patterns in Young VWD Patients
Health and Well Being, Industry News & Research, Living with a Bleeding Disorder
Historically, data on infants and toddlers (ITs) with von Willebrand disease (VWD), particularly relevant to bleeding patterns, has been lacking. To address…
New Paper Highlights Integrated Care Model and the National HTC Network
Health and Well Being, Industry News & Research, Living with a Bleeding Disorder
For more than 40 years, the hemophilia treatment center (HTC), the U.S. HTC Network (USHTCN), and its model of integrated, patient-centered care…
NHF’s Dr. Leonard Valentino Talks COVID-19, Vacccinations and Gratitude
COVID-19, Industry News & Research
Life during the time of COVID-19 Can you describe your life during the pandemic … in only six words? Well, a group…
NHF’s National Youth Leadership Institute (NYLI) is Accepting Applications Until Dec. 15 for 2022. Apply Today!
Industry News & Research
Are you between the ages of 18-22 and interested in a leadership program made just for you? Or do you know a…
Ask A Social Worker! NHF’s HemAware Column Offers Advice for Community Members
Health and Well Being, Industry News & Research
Do you have questions about caregiving, aging, insurance, relationships, or other issues impacted by your status as a community member? NHF can…
Descriptive Study Looks at HTC Social Worker Roles
Industry News & Research
While social workers have functioned as essential members of the multidisciplinary care teams at the core of U.S. hemophilia treatment center (HTC)…
Ask Your Elected Official to Make All Copays Count!
Advocacy & Legislation, Industry News & Research
The National Hemophilia Foundation helped spearhead new legislation that aims to support the more than 133 million Americans living with a chronic…
All Copays Count Coalition Applauds House Introduction of Help Ensure Lower Patient Copays Act
Advocacy & Legislation, Industry News & Research
Legislation Introduced by Representatives McEachin and Davis Would Eliminate Harmful and Misleading Health Plan Pricing Schemes and Protect Vulnerable Patients. The All…