News
New Government Funded Research Program Created to Help Improve Gene Therapies for People with Hemophilia A
Industry News & Research
A group of investigators are embarking on a new research program designed to unpack some of the outstanding fundamental questions associated with…
Medicaid Renewals Post Pandemic
Industry News & Research
Government health agencies have begun preparing for the end of the COVID-19 public health emergency. When the emergency period ends, state Medicaid…
Is Your Child Ready to Embrace Camp This Year? Join us for Camp Klotty Pine August 8-13!
GLHF News
Each camper arrives at GLHF’s Camp Klotty Pine feeling different about the week ahead, but all campers leave feeling like they are…
Join us for GLHF’s GooseChase Challenge Week. Help us Spread Awareness for the Global and Local Bleeding Disorders Community!
GLHF News
To commemorate World Hemophilia Day, we’re challenging the Wisconsin Bleeding Disorders Community to a friendly game of gooseChase! During the week of…
BioMarin Provides Update to Ongoing Phase 3 Hemophilia A Gene Therapy Study
Industry News & Research
An update for the hemophilia community from BioMarin, regarding the ongoing Phase 3 BioMarin hemophilia A gene therapy study, and a serious…
Sanofi and SOBI Announce Results of XTEND-1 Phase 3 Study
Industry News & Research
Read the original press pelease here. Efanesoctocog alfa met primary and key secondary endpoints in pivotal study in hemophilia A, demonstrating superiority to prior…
Freeline Announces First Patient Doses in Hemophilia B Trial
Industry News & Research
Freeline TherapeuticsHoldings plc announced that the first patient was dosed in its Phase 1/2 B-LIEVE dose-confirmation clinical trial of FLT180a for the…
An Update on Gene Therapy for Hemophilia
Industry News & Research
Answers to common questions about this potentially game-changing treatment. After several decades of research, gene therapy for hemophilia is moving closer to…
Advocating for Your Care in the Emergency Room
Health and Well Being, Living with a Bleeding Disorder
by: Lena Volland, PT, Ph.D.(c). In this video, Lena Volland, PT, DPT, Director of Education at the NHF, discusses how to prepare…
Hemophilia A vs. B: What’s the Difference?
Industry News & Research, Living with a Bleeding Disorder
Much is the same when it comes to hemophilia A and B, but a few key differences change how common—and how treatable—they…
Ask a Social Worker: How Can I Be an Advocate for the Hemophilia Community?
Health and Well Being, Living with a Bleeding Disorder
Advice for people who are looking to help raise awareness. by: Bobby Korathu, MSSA, LCSW. Korathu is a social worker at the…
Four Reasons to Establish Care at a Hemophilia Treatment Center
Health and Well Being, Living with a Bleeding Disorder
Learn why HTCs can be partners in care over the course of a lifetime. If you or someone you love has been…
A Brief History of Gene Therapy: What It Means and Its Promise for the Hemophilia B Community
Industry News & Research, Living with a Bleeding Disorder
Over 10,000 individuals worldwide have been treated with various gene therapy products. Gene therapy is a medical treatment that uses DNA to…
National Hemophilia Foundation “Starts the Conversation” During Bleeding Disorders Awareness Month, March 1-31
Advocacy & Legislation, Health and Well Being, Living with a Bleeding Disorder
Awareness month campaign encourages the community to raise their voices and share what is most important and relevant to their conditions throughout…
Clinical Study and New Website to Focus on von Willebrand Disease and Pregnancy
Health and Well Being, Living with a Bleeding Disorder
This new study was developed to increase understanding of how best to manage bleeding during delivery and the postpartum period in women…
Camp Klotty Pine’s Leader In Training (LIT) Program Now Accepting Applications for 2022 Program
GLHF News
Calling all former campers and returning LITs! GLHF is now accepting applications for our Camp Klotty Pine Leader in Training (LIT) program…
GLHF Celebrates the 10th Anniversary of Milwaukee’s Best Bloody on April 24! Help us Celebrate, Raise Funds for the Bleeding Disorders Community and Vote for your Favorite Bloody Mary!
GLHF News
In case you missed it, Milwaukee’s Best Bloody is now scheduled for Sunday April 24 at the Italian Community Center. And this…
Hemophilia and Blood Clots: A Surgery That Nearly Cost Me My Life
Living with a Bleeding Disorder
VWD, Hemophilia B and Surgery as a Woman. Jennifer Lynne, a woman with Hemophilia B and VWD, faced surgery… and almost lost…
Copay Accumulator Adjustor Programs (CAAP)
Advocacy & Legislation
Copay Accumulator Adjustor Programs (CAAPs) are a strategy used by insurers to redirect the value of manufacturer copay assistance – which is…
Cell Therapy Hits a Stumbling Block
Industry News & Research
Cell therapy is a fascinating approach to treat hemophilia. But recently the clinical trials hit a stumbling block. What happened? Read more…
Meet MASAC’s New Chair: Dr. Amy Dunn
Industry News & Research
Dunn looks to diversity and advocacy as the incoming head of MASAC. One patient changed Dr. Amy Dunn’s entire career in her…
Takeda Announces Approval of Prophylactic Indication for VWD Therapy
Industry News & Research
Takeda recently announced that the U.S. Food and Drug Administration (FDA) has approved VONVENDI® for routine prophylaxis to reduce the frequency of…
Update from BioMarin Phase 3 Trial
Industry News & Research
BioMarin’s investigational gene therapy for hemophilia A has not been approved for use; clinical trials are ongoing. Please click this link to read…
Co-pay Accumulator Policies Hurt Patients. There’s a Simple Solution.
Advocacy & Legislation
by: Kollet Koulianos and Amy NilesV This piece is a joint effort by Amy Niles, Executive Vice President at the PAN Foundation,…