News
NBDF’s New Video Series: Voices for Policy Change
Advocacy & Legislation, Living with a Bleeding Disorder
“Voices for Policy Change” is an on-line resource designed to educate, empower and mobilize on important legislative issues related to bleeding disorders…
Learn About NBDF’s “My Life, Our Future” Program
Health and Well Being, Living with a Bleeding Disorder
“My Life, Our Future” (MLOF) is a collaborative effort that seeks to advance understanding of hemophilia by developing the MLOF Research Repository, a scientific resource….
3 Critical Conversations to Have with Your HTC Social Worker
Health and Well Being, Living with a Bleeding Disorder
Opening up about insurance issues, loneliness, and other challenges can benefit you and others in the bleeding disorders community. Here are three…
A Gene Therapy Discontinued
Advocacy & Legislation, Gene Therapy, Industry News & Research, Living with a Bleeding Disorder
Less than a year after FDA approval, Beqvez, a gene therapy for hemophilia B, has been discontinued. Manufactured by Pfizer, the one-time…
NBDF’s New Video Series: Voices for Policy Change
Advocacy & Legislation, Industry News & Research, Living with a Bleeding Disorder
“Voices for Policy Change” is an on-line resource designed to educate, empower and mobilize on important legislative issues related to bleeding disorders…
New Federal Policies and Your Coverage
Advocacy & Legislation, Living with a Bleeding Disorder
Read Hemophilia Federation of America’s excellent “Word from Washington” about how new policies can affect you and overage for your medical care….
Leadership: Anger, Respect, and Results
Industry News & Research, Living with a Bleeding Disorder
by: Laurie Kelley March is hemophilia awareness month and the recent upheaval over leadership in this country has me thinking about leadership…
Coming in 2025! La Kelley Communications’ Flagship Book Raising a Child with Hemophilia Will Be Published Mid-2025
Health and Well Being, Living with a Bleeding Disorder
First published in 1990, this sixth edition is updated to include new medical treatments, resources and up-to-date advice from parents. Stay tuned…
Read, Learn, Act!
Advocacy & Legislation, Living with a Bleeding Disorder
The year has already seen incredible changes with a new presidential administration and over 45 new executive orders. A great article explores…
Rest in Peace, First Lady
Health and Well Being, Industry News & Research, Living with a Bleeding Disorder
The hemophilia community mourns the passing of Suzanne Massie, age 94, arguably the “first lady” of hemophilia. She and her former husband…
All Your Choices in One Place
Health and Well Being, Industry News & Research, Living with a Bleeding Disorder
Download LA Kelley Communications’ updated Factor Chart to see how many choices you may have, what might be right for you and…
Watch NBDF’s Testimony on Key Prescription Drug Affordability Bill!
Advocacy & Legislation, Living with a Bleeding Disorder
Want to hear firsthand how NBDF is advocating for the bleeding disorders community? Watch the video of Bill Robie, NBDF’s Senior Director…
A Message from the Heart of NBDF
Health and Well Being, Industry News & Research, Living with a Bleeding Disorder
Our Commitment to Health Equity & Inclusive Care At NBDF, our mission is clear—every person and family affected by bleeding disorders deserves…
Support for Young Adults Navigating Higher Education
Health and Well Being, Living with a Bleeding Disorder
Transitioning to higher education is an exciting but potentially challenging time for everyone. Don’t fret, we are here to help! This new…
How to Navigate Cold and Flu Season with a Bleeding Disorder
Health and Well Being, Living with a Bleeding Disorder
Winter is the peak season for sneezin’ — and the congestion, coughing, and achiness that often come with colds and flu. Here’s what…
Clinical Practice and Hemophilia Gene Therapy the Focus of New Accredited Activity
Industry News & Research, Living with a Bleeding Disorder
The U.S. Food and Drug Administration (FDA) has granted Fast Track designation to the investigational von Willebrand disease (VWD) therapy VGA039. The…
FDA Approves New Non-Opioid Treatment for Pain
Health and Well Being, Industry News & Research, Living with a Bleeding Disorder, Pain Management
The U.S. Food and Drug Administration (FDA) recently approved Journavx™ (suzetrigine) 50 milligram oral tablets, a first-in-class non-opioid analgesic developed to treat…
Ever Wonder Why Hemophilia B Was Once Called Christmas Disease?
Industry News & Research, Living with a Bleeding Disorder
Did You Know? The name for a well-known bleeding disorder has a surprising origin tied to a 5-year-old boy from Canada. Learn why…
How to Cope with Seasonal Depression When You Have a Bleeding Disorder
Health and Well Being, Living with a Bleeding Disorder
About 1 in 20 people have seasonal affective disorder, or SAD, a form of depression that occurs during the winter and gets…
Michigan Study Explores Gene Therapy Understanding in Hemophilia Community
Gene Therapy, Industry News & Research, Living with a Bleeding Disorder
Participate in Groundbreaking Michigan Study on Gene Therapy Awareness in the Hemophilia Community The National Bleeding Disorders Foundation is supporting an important…
NBDF’s Patient Assistance Programs (PAPs) Listing Updated!
Health and Well Being, Industry News & Research, Living with a Bleeding Disorder
The National Bleeding Disorders Foundation’s (NBDF) HANDI program has updated the online Patient Assistance Programs (PAPs) listing. The PAPs resource page encompasses programs designed to…
New Recommendations Issued on Bleeding Disorders Treatment, Bone Health and Mental Health
Health and Well Being, Industry News & Research, Living with a Bleeding Disorder
The National Bleeding Disorders Foundation (NBDF) has announced that three new documents have been issued by the Medical and Scientific Advisory Council…
New Video Series: Voices for Policy Change
Advocacy & Legislation, Living with a Bleeding Disorder
Voices for Policy Change is a video series created by the National Bleeding Disorders Foundation (NBDF) designed to educate, empower and mobilize the community about important legislative…
B Informed!
Health and Well Being, Industry News & Research, Living with a Bleeding Disorder
For thirty years, the Coalition for Hemophilia B has improved the quality of life for people with hemophilia B and their families…