News
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,…
GLHF Met Virtually with Elected Officials on Wisconsin Legislative Day, January 26
GLHF News
Thank you to all of the state representatives and legislators who met with GLHF advocates for Wisconsin Legislative Day on January 26! Constituents…
Remembering Val Bias
GLHF News, Industry News & Research
A Statement from the National Hemophilia Foundation: Like many reading this note, NHF is profoundly heartbroken over the recent passing of Val…
The FDA’s Office of Patient Affairs Shares Highlights from 2021 Programs and Encourages you to Participate in their Upcoming 2022 Activities.
Advocacy & Legislation, COVID-19, Industry News & Research
The United States Food and Drug Administration’s Office of Patient Affairs is sharing recent highlights with the public from 2021 and is…
Sigilon Announces a Priority Shift in Light of Clinical Trial Setbacks
Industry News & Research
The phase 1/2 trial of SIG-001 for hemophilia A has been on an FDA clinical hold since July 2021. Sigilon Therapeutics recently…
New Study Looks at Physical Activity Risk in Patients with Hemophilia A
Industry News & Research, Living with a Bleeding Disorder
This study designed to assess the link between physical activity levels, FVIII infusion, and occurrence of bleeding episodes. Results of a recently…
Remembering Val Bias: A Note from Dr. Glenn Pierce
GLHF News, Industry News & Research
Dr. Glenn Pierce reflects on the passing of former NHF CEO, Val Bias. Val and I first got to know one another…
National Hemophilia Foundation Mourns the Loss of Longtime CEO, Val Bias
GLHF News, Industry News & Research
Former CEO spent decades inspiring the inheritable blood disorders community. NHF is deeply saddened to announce that former NHF CEO and community…
All Copays Count Coalition Statement on Draft 2023 CMS Notice of Benefit and Payment Parameters
Advocacy & Legislation, Industry News & Research
The latest breaking news from the All Copays Count Coalition. In response to additional rulemaking for the Centers for Medicare & Medicaid…
Gene Therapy: Where Do We Go From Here?
Industry News & Research
In this video, Tammuella Chrisentery-Singleton, M.D., Chief of Hematology for the Louisiana Center for Advanced Medicine, gives an overview of gene therapy…
Glanzmann’s Thrombasthenia and Bernard-Soulier Syndrome
GLHF News, Industry News & Research
Here’s what we know about these ultra-rare platelet disorders. Most bleeding disorders are relatively rare. Even the most common bleeding disorder, von…
Seek Immediate Medical Care for These Bleeds
Health and Well Being, Living with a Bleeding Disorder
Here’s everything you need to know about the most dangerous bleeds, including symptoms and preventive measures. by: Michael Hickey Members of the…
Bleeding Disorders in Pop Culture
GLHF News, Health and Well Being
A roundup of films, TV shows and plays that have featured hemophilia and other bleeding disorders. Having a rare disease like hemophilia…