News

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…

Herd Immunity Isn’t Going to Happen
COVID-19 / Coronavirus
Scientists – including Dr. Fauci – are estimating that around 90% of the US population would need to be either recovered from…

COVID-19 Update: Vaccinations
COVID-19 / Coronavirus
CDC COVID Data Tracker: To date, there have been 27,879,604 cases reported in the US resulting in nearly 500,000 deaths of Americans!…

NHF: Vaccination and COVID-19 Update
COVID-19 / Coronavirus
by: Dr. Leonard Valentino, Chief Executive Officer, National Hemophilia Foundation So, where are we with vaccines for COVID-19? Well, let’s first start…

Should People with Hemophilia Get the COVID-19 Vaccine?
COVID-19 / Coronavirus
Answers for the bleeding disorders community to frequently asked questions about the vaccine. Read more. Source: National Hemophilia Foundation, HemaWare.

Infusing the World with Knowledge
Advocacy & Legislation
Learn about the power of advocacy in the bleeding disorders community. Read more. Source: National Hemophilia Foundation, HemaWare.

Video: The State of Copay Accumulator Adjustment
Industry News & Research, Uncategorized
In this video, Kollet Koulianos from NHF’s Payer Relations team explains the significance of copay Accumulator Adjustment programs. Watch now. Source: National…

19 Recommendations for Better Diagnosis and Treatment of VWD
Industry News & Research
The guidelines were developed by panels of 32 individuals, including hematologists, people living with VWD, and scientists with expertise in guideline development…

BioMarin Announces Positive Phase 3 Study Data for Valoctocogene Roxaparvovec
Industry News & Research
The phase 3 trial currently includes 134 participants with hemophilia A, all of whom have received a single dose of the gene…

as i see it: Patient Education Through Social Media in the COVID Era
COVID-19 / Coronavirus, Health and Well Being, Living with a Bleeding Disorder
by: Laurence Woollard, Hemophilia Influencer © PEN (Parent Empowerment Newsletter), LA Kelley Communications, Inc. The unparalleled, seismic societal shifts over the past…

Video: COVID-19: Mitigation, Treatment and Vaccines
COVID-19 / Coronavirus, Health and Well Being
In this video, Dr. Phillip Jacobson of Rush University discusses vaccine administration and distribution, community risks, and vaccine delivery mechanisms. Watch Video.

COVID-19 Vaccines and Bleeding Disorders: FAQs and Guidance
COVID-19 / Coronavirus, Health and Well Being, Living with a Bleeding Disorder
COVID-19 Vaccines and Bleeding Disorders: FAQs These FAQs were created in anticipation of questions or concerns individuals with bleeding disorders may have…

Join us on February 13-14 for a special edition of Milwaukee’s Best Bloody…To Go!
Events, GLHF News, Uncategorized
Join us on February 13-14 for a special edition of Milwaukee’s Best Bloody…To Go! Keep an eye on your email and social…

President Trump Signs FY21 Federal Funding Bill Including Hemophilia SNF Access Act and Funding for Bleeding Disorders Programs
Advocacy & Legislation, COVID-19 / Coronavirus, Health and Well Being, Industry News & Research, Living with a Bleeding Disorder
The Consolidated Omnibus Appropriations Bill, 2021, signed into law by President Trump on December 27, 2020 included a number of provisions important…

COVID-19: Latest News and Updates
COVID-19 / Coronavirus
What You May Feel After Getting the COVID-19 Vaccine It’s important that people understand that there may be some side effects after…

NHF Offers Weekly Webinars Beginning Jan. 13 – What You Can Expect From NHF in the Upcoming Year
Industry News & Research
The National Hemophilia Foundation (NHF) will be hosting a series of weekly webinars every Wednesday at 1 p.m. CST (2 p.m. ET) beginning…

Let’s Talk: Mental Health – Join us Sunday, January 31 at 11 a.m.! Register Today!
Events, GLHF News, Health and Well Being
Join GLHF for a special screening of Let’s Talk: Mental Health, followed by a live talk back with Believe Limited’s Co-Founder and CEO, Patrick…

Navigating the Pandemic with a Bleeding Disorder
COVID-19 / Coronavirus, Living with a Bleeding Disorder
Learn how three young adults with bleeding disorders are living life during the COVID-19 pandemic. Read more hemaware.org

Women Fighting for Change
Health and Well Being, Living with a Bleeding Disorder
Six women share their own stories of overcoming challenges and offer their best advice in hopes of educating, inspiring and uplifting other…

Marijuana and CBD for Chronic Pain: What You Need to Know
Health and Well Being, Industry News & Research, Living with a Bleeding Disorder
Learn about the potential benefits and risks, along with what to look out for when evaluating products. Read more hemaware.org