News
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…
Seek Immediate Medical Care for These Bleeds
Health and Well Being, Living with a Bleeding Disorder
Here’s everything you need to know about the most dangerous bleeds, including symptoms and preventive measures. by: Michael Hickey Members of the…
Bleeding Disorders in Pop Culture
GLHF News, Health and Well Being
A roundup of films, TV shows and plays that have featured hemophilia and other bleeding disorders. Having a rare disease like hemophilia…
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…
HFA Action Alert: Tell Congress to permanently secure enhanced Advance Premium Tax Credits passed in the American Rescue Plan Act.
Advocacy & Legislation
Join more than 30 community members from across the country who are holding virtual visits and calls with their senators and representatives…
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…
NHF Responds: Gov. Whitmer Signs First Bill Repealing Tampon Tax, Drives Down Costs for Families
Advocacy & Legislation, Health and Well Being
Bill is part of two-bill bipartisan package that will repeal taxes on menstrual products. NHF Statement In Response to New Michigan Law: “The…
NHF Statement on HELP Copays Act
Advocacy & Legislation, Industry News & Research
NHF has led the All Copays Count Coalition in helping support HR 5801. The National Hemophilia Foundation applauds Congressional Representatives Donald McEachin…
NHF Statement on Approval of the Pfizer-BioNTech Vaccine for Children Ages 5-11
Health and Well Being, Industry News & Research
COVID-19 vaccine for children ages 5-11 receives final approval. “NHF applauds the CDC’s recommendation of the Pfizer-BioNTech COVID-19 vaccine for children 5…