News
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)…
Continued Conversation on the State of Access to Women’s Health Care
Advocacy & Legislation, Health and Well Being
Recent changes in access to women and girls’ health care are likely to have detrimental effects for the blood and bleeding disorders…
Open Enrollment for 2023 Health Insurance is Underway!
Advocacy & Legislation, Health and Well Being
Open enrollment for 2023 health insurance programs has started! The Hemophilia Federation of America (HFA) offers tips for navigating the open enrollment…
GLHF Adds New Resources to Website
GLHF News
GLHF recently added resources to its website for pain management and women with bleeding disorders, as well as the World Federation of…
Together Again! GLHF’s Unite Walk Was a Day of Community Celebration, Family, Fun and Raising Funds for the Bleeding Disorders Community of WI!
GLHF News
“I walk so that I can be around other people who are like me,” said one young Unite for Bleeding Disorders Walk…
Be Your Own Advocate!
Advocacy & Legislation
Accessia Health (formerly PSI) is offering free webinars to help you learn to advocate for your insurance and health needs. Information covered…
NHF Calls on CMS to Address Copay Accumulator Adjustors in the 2024 Notice of Benefit and Payment Parameters
Advocacy & Legislation, Industry News & Research
In early October, NHF joined members of The All Copays Count Coalition (ACCC), sending a letter signed by 73 leading patient advocacy and…
Recruitment Reopened for Phase 3 AFFINE Gene Therapy Trial
Industry News & Research
This trial is evaluating the efficacy and safety of a single infusion of an investigational gene therapy in individuals with moderately severe…
BioMarin Shares Community Update for Valoctocogene Roxaparvovec
Industry News & Research
Biomarin recently provided an “Update for the Hemophilia Community,” on the ongoing clinical trial program for its investigational hemophilia A gene therapy,…
Pain Management for Adults
Living with a Bleeding Disorder, Pain Management
Pain is a serious medical concern in America. For those with a bleeding disorder, pain as a result of a bleeding episode…
Ask a Social Worker: How Can I Convince Someone to Seek Mental Health Treatment?
Health and Well Being
Advice for family members on how to bring up mental health treatment with loved ones. Ask a Social Worker is a monthly…
Comprehensive Pain Management: The Old and the New
Health and Well Being, Living with a Bleeding Disorder
In this video, pain management specialist, Dr. Kim Mauer of Oregon Health and Science University, provides an overview of current treatments available…
Are Nasal Swabs in At-Home COVID Tests Safe for People with Bleeding Disorders?
COVID-19
by: Michael Hickey How to stay safe from potential testing-related bleeds. It’s 2022 and COVID-19 is, unfortunately, still around. Of course, things…
Record-Keeping Tips for the Bleeding Disorders Community
Health and Well Being, Living with a Bleeding Disorder
by: Michael Hickey Keeping an accurate treatment log is an essential part of managing a bleeding disorder. Here’s how you can do…