News
Positive Gene Therapy Results
Industry News & Research
Pfizer had positive results from the Phase 3 BENEGENE-2 study evaluating fidanacogene elaparvovec, an investigational gene therapy, for the treatment of adult…
Common Questions About von Willebrand Disease (VWD)
Health and Well Being, Industry News & Research, Living with a Bleeding Disorder
It’s the most prevalent, yet lesser known, bleeding disorder. Here’s what you need to know about VWD. by: Michael Hickey Of the…
NHF Fellowship: 50 Years of Insights, Innovation, and Breakthroughs
Industry News & Research
NHF’s Judith Graham Pool Postdoctoral Research Fellowship program turns 50. We spoke with five awardees about how the fellowship shaped their careers….
Can People with Bleeding Disorders Take Blood Thinners?
Industry News & Research, Living with a Bleeding Disorder
by: Donna Behen Blood Safety Millions of Americans who have or are at high risk for heart disease regularly take anti-platelet drugs…
Telehealth for the Bleeding Disorders Community
Health and Well Being, Industry News & Research, Living with a Bleeding Disorder
Telemedicine provided vital access to blood and bleeding disorders care during the pandemic. What does the future hold for this technology? Remote…
Coming Soon: CDC to add COVID-19 Information Collection to the Community Counts Registry
COVID-19
In the coming months, the Centers for Disease Control and Prevention will be adding COVID-19 Information Collection to the Community Counts Registry….
Hemophilia Federation of America Outlines Year-End Omnibus Spending Bill with Important Health Provisions Affecting Medicaid, Telehelath, New Drugs and More
Advocacy & Legislation, Industry News & Research
Hemophilia Federation of America’s Word from Washington outlines a massive year-end omnibus spending bill containing numerous important health provisions affecting Medicaid, telehealth,…
Safeguarding an Essential Treatment for Heavy Periods – What Contraception Bans Would Mean for the Bleeding Disorders Community.
Advocacy & Legislation, Health and Well Being, Living with a Bleeding Disorder
In June, when the Supreme Court overturned Roe v. Wade and ended the constitutional right to abortion, women’s health advocates around the…
What Men with Hemophilia Need to Know About Diabetes
Health and Well Being, Living with a Bleeding Disorder
Recent studies have found that older men with hemophilia have a higher risk of diabetes than those without the bleeding disorder. An…
Mental Health Crisis for Teens
Health and Well Being, Living with a Bleeding Disorder
Adolescents in the blood disorders community who have mental health problems often face added barriers to serious behavioral health care. The last…
Are You Ready for GLHF’s 2023 Best Bloody Events? Holiday Ticket Prices Run Through Jan. 1!
GLHF News
New this year: Purchase tickets to multiple cities, at one time, and receive discounted pricing. Are you as excited as we are…
CDC Public Health Webinar on Blood Disorders – GLHF’s Kaveh Shabtaie Featured
Advocacy & Legislation, GLHF News
The Centers for Disease Control and Prevention’s (CDC) Division of Blood Disorders offers an ongoing Public Health Webinar Series on Blood Disorders. The…
Volunteer with GLHF in 2023!
GLHF News
GLHF would not be able to put on several programs and events throughout the year without the help of our incredible volunteers….
Do You Have Cabin Fever? Save-the-Date For the Best Week of Summer – Camp Klotty Pine is August 7-12!
GLHF News
Is it too early in the winter for cabin fever? We don’t think so! Grab your calendars and save-the-date for the best…
Rare Disease Day is Feb. 27! Dr. Califf, Commissioner of Food and Drugs, Kicks Off This Year’s Theme, “Intersections with Rare Diseases – A Patient Focused Event”
Advocacy & Legislation, Living with a Bleeding Disorder
The Food and Drug Administration (FDA) has announced that FDA’s Rare Disease Day is Monday, February 27. Registration is open for this…
The 2023 Unite for Bleeding Disorders Walk is September 23! Register Your Walk Teams Today!
GLHF News
GLHF’s 2023 Unite for Bleeding Disorders Walk will be Saturday, Sept. 23 at the Milwaukee County Zoo (in the Zoo Terrace). We will…
The Spirit of Giving: Camp Klotty Pine’s Leader-in-Training Program
GLHF News
When you have been coming to Camp every summer since you were eight years old, there comes a point when you have…
Pfizer and Sangamo Therapeutics Announce Phase 3 Trial of Investigational Gene Therapy for Hemophilia A Has Re-Opened Recruitment September 23, 2022 Share on facebook Share on twitter Share on linkedin
Industry News & Research, Living with a Bleeding Disorder
Pfizer and Sangamo Therapeutics announced that the Phase 3 AFFINE study evaluating giroctocogene fitelparvovec, an investigational gene therapy for patients with moderately…
HFA Statement on FDA Approval of First-Ever Gene Therapy for Hemophilia B
Industry News & Research, Living with a Bleeding Disorder
Five years ago, Hemophilia Federation of America articulated a broad vision that includes advocating for improved care and quality of life for…
FDA Approves First Gene Therapy to Treat Adults with Hemophilia B
Gene Therapy, Industry News & Research, Living with a Bleeding Disorder
On November 22, the U.S. Food and Drug Administration approved Hemgenix (etranacogene dezaparvovec), an adeno-associated virus (AAV) vector-based gene therapy. It is…
Sanofi Provides Fitusiran Trial Updates at ISTH
Industry News & Research
These updates were presented during the International Society on Thrombosis and Haemostasis (ISTH) Congress in London. Sanofi recently shared new clinical trial…
BioMarin Receives Conditional Approval in Europe for Gene Therapy
Industry News & Research
The European Commission granted conditional approval to BioMarin’s Hemophilia A gene therapy Valoctocogene Roxaparvovec which will be known as Roctavian. With this…
Additional Health Risks for Men with Hemophilia
Living with a Bleeding Disorder, Men with Bleeding Disorders
Diabetes and infection with human immunodeficiency virus (HIV) increase the risk of high blood pressure (hypertension) among men with hemophilia, a U.S. study…
New Document to Help Residential Substance Use Disorder Placement for Individuals with Bleeding Disorders
Health and Well Being, Living with a Bleeding Disorder
The document includes best practices for HTC providers in accessing residential substance use disorder treatment Historically, many residential substance use disorder (SUD)…