News
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…
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…
How Caregivers Can Care for Themselves
Health and Well Being
by: Michael Hickey Caregivers devote themselves to the well-being of others, but to be their best they need to practice self-care. Being…
A Groundbreaking Discovery for Hemophilia Research
Health and Well Being, Industry News & Research
Biochemist Gordon Vehar, PhD, vice president of external innovation at BioMarin Pharmaceutical Inc., has been at the forefront of a scientific revolution….
Let Your Voice Be Heard! Take the National HTC Patient Satisfaction Survey Today!
GLHF News, Health and Well Being, Living with a Bleeding Disorder
Hemophilia Treatment Centers (HTCs) across the United States are participating in the 2021 National HTC Patient Satisfaction Survey! If you, or someone…
We Miss Seeing You! Join us (Virtually) at our Upcoming Programs and Events!
GLHF News
We have been limited in our ability to meet face-to-face over the last year, but we want to continue to stay connected…
Extended ACA Open Enrollment Period
COVID-19, Health and Well Being
You can enroll in health plans due to the COVID-19 emergency through August 15, or anytime if you have certain life changes…
State of WI Declares April 17 World Hemophilia Day!
Advocacy & Legislation
Whereas; since its designation by the World Federation of Hemophilia in 1989, World Hemophilia Day has been celebrated on April 17 as…
Good News for Pregnant and Breastfeeding Vaccinated Mothers
COVID-19, Health and Well Being
Early studies have indicated that women who are pregnant or breastfeeding who have received a COVID-19 vaccination can pass antibodies along to…
COVID-19 Rates Are Rising
COVID-19
There has been much positive news around the US vaccine efforts: about 207.9 million doses of the vaccine have been administered, 62.4 million…
NHF’s Dr. Leonard Valentino Addresses COVID-19, Vaccines and Collaborative Progress
COVID-19, Industry News & Research
You have been reaching out to us with your questions and concerns about the COVID-19 vaccines and we are grateful that you…
Learn More About the COVID-19 Vaccines and ITP
COVID-19, Industry News & Research
The Platelet Disorder Support Association recently recorded a patient education webinar on the new COVID-19 vaccines and immune thrombocytopenic purpura (ITP) As…
uniQure Announces Findings from HCC Case Investigation in HOPE-B Trial for Gene Therapy
Industry News & Research
The focus of the HOPE-B trial is etranacogene dezaparvovec, uniQure’s investigational gene therapy candidate for individuals with severe and moderately severe hemophilia…
How the American Rescue Plan Can Affect Your Healthcare Coverage
COVID-19
The new law lowers costs and opens up new options to get health insurance coverage. The American Rescue Plan (ARP), signed into…
The Impact of Copay Accumulator Adjuster Programs on Patients
Industry News & Research
In the age of high deductibles and patient out-of-pocket expenditures, more and more people depend on copay assistance to afford their life-saving…
Stay Informed and Take Action About Current Legislative Issues. Sign up for Phone2Action Today!
GLHF News
Phone2Action is a new software system that allows GLHF to connect with you regarding our state advocacy work. It gives us the…
Spark Announces Preliminary Data from Investigational Gene Therapy Trial
Industry News & Research
Spark Therapeutics announced preliminary data from part one of their ongoing phase 1/2 open-label, non-randomized, dose-finding study of SPK-8016, the company’s investigational…
Sanofi Revises Fitusiran Dosing Regimen to Mitigate Risk
Industry News & Research
Source: Joint statement from the European Hemophilia Consortium, the World Federation of Hemophilia, and the National Hemophilia Foundation Fitusiran update following EAHAD…
In Celebration of World Hemophilia Day, Join GLHF for a Friendly Game on GooseChase, April 12-18!
Advocacy & Legislation, GLHF News
This year, in celebration of World Hemophilia Day, Saturday, April 17, we’re challenging the bleeding disorders community to a friendly game of…