If you want to be in the know about what’s going on at our organization, you’ve come to the right place!
CSL Behring, the biopharmaceutical company behind the hemophilia B gene therapy HEMGENIX ® (etranacogene dezaparvovec-drlb), provided an update to the bleeding disorders community regarding the availability of the treatment. In a letter to the hemophilia B community, the company stated that they have “reestablished limited supply in April 2026,” and that they remain committed to actively managing the existing supply.
No matter what your job is, it’s an chance to connect and come together. If you want to use your work for others, check out five ways you can give back at work.
In a letter sent to healthcare providers, Ferring Pharmaceuticals announced that STIMATE® (desmopressin acetate) nasal spray is expected to be available in the United States beginning October 2026.
When it comes to supporting local business, there’s more to it than helping the community; it supports you too. Check out these reasons why going local helps you out in the long run.
Mindfulness involves focusing our attention on being fully present, being aware of who we are and what we’re doing and accepting our surroundings without judgment. If you want to practice mindfulness, check out these easy steps.
Federal:
Medicaid Work Reporting Requirements
Our words are powerful, and should be treated with respect. So how do our words impact others, and how can we choose them wisely? Today, we’re going to find out.
Independence Day celebrates the United States' sovereignty, culture and freedom. You can be a part of that by taking advantage of these 5 ideas to honor our nation's troops.
You can still be involved with your dearest philanthropic cause without having to get up from the couch. Interested? Check out these easy ways to donate without having to leave your house.
The U.S. Food and Drug Administration (FDA) has approved an expanded indication for the hemophilia treatment HYMPAVZI® (marstacimab-hncq) to now include people with hemophilia A or B.
Iron deficiency, with and without anemia, is the most common micronutrient deficiency around the world. People with bleeding disorders have a higher risk of developing these conditions due to blood loss from bleeding episodes. Until now, there were no standardized guidelines for screening for iron deficiency in people with bleeding disorders. That has changed with the release of NBDF’s Medical and Scientific Advisory Council’s (MASAC) new recommendations that give doctors and other clinicians clear guidance on how to address this issue.
With all of the outside pressure, it can be difficult to try and live a positive life. Check out these tips for how to positively live a positive lifestyle.
If you’re looking for a way to get in shape and get involved in the community, we’ve got you covered. Here are five reasons to run for a charity this summer.
On June 1st, 2026, the federal Centers for Medicare and Medicaid Services (CMS) released its long-awaited rule providing guidance to state Medicaid programs on how to implement the Medicaid work reporting requirements and eligibility limits enacted last year as part of HR 1, the One Big Beautiful Bill Act.
Federal:
FED UP with Bleeding Disorders Act Introduced in House
If you’re interested in living an altruistic lifestyle while still watching your wallet, check out this list of unique things you can donate besides money.
Today we’re going to discuss everything you need to know about Memorial Day: where it came from, why it’s important and how you can honor our nation’s heroes today.
On May 22nd, Representatives Julie Johnson (D-TX-32), Joe Wilson (R-SC-02), and Rep. Sarah McBride (D-DE-At Large) introduced the Fostering Effective Diagnosis and Treatment for Underserved Populations with Bleeding Disorders Act (FED UP with Bleeding Disorders Act, H.R. 8794), federal legislation introduced in the United States Congress aimed at improving diagnosis, treatment, and research equity.
When it comes to living a positive lifestyle, our habits either make or break us. If you’re interested in starting a habit that you can actually stick with, check out these useful tips.
Jacob Murdock, current senior executive director of the Nevada Chapter of the National Bleeding Disorders Foundation (NBDF Nevada), will also assume leadership of the organization’s Nebraska chapter, NBDF Nebraska.
You want to make a difference, but aren’t sure where to start without money. Fortunately, we have ideas to help you donate to charity without breaking the bank.
The Idaho Chapter of the National Bleeding Disorders Foundation (NBDF Idaho) and the Snake River Hemophilia & Bleeding Disorders Association (Snake River) have announced plans to merge, forming a single statewide organization that will operate as NBDF Idaho within the National Bleeding Disorders Foundation’s national chapter network.
These books inspire the altruistic lifestyle and show anyone can make an impact on the world. Let’s explore each of them more in depth.
When things are busy, wellness often takes a backseat to our presumed priorities. Check out a few ways to bring your personal health back to the forefront of your life.
The National Bleeding Disorders Foundation (NBDF) is proud to announce that Maria E. Santaella, PhD(c), MSN, RN-BC, CPHON, senior vice president of research strategy, has been named editor in chief of Bleeding Disorders Care & Practice.
For seniors, volunteering is the perfect chance to use extra time to make a difference in the community. Check out these positive reasons for seniors to volunteer.
The National Bleeding Disorders Foundation, a leading U.S. organization dedicated to improving care for people with bleeding disorders, has announced its 2025 NBDF-Takeda Clinical Fellowship Awardees: Deeksha Katoch, MBBS, and Peter Zhao, MD.
This month, you can try some of these activities to support your community.
Federal:
Strong Support for FY27 Funding for Federal Bleeding Disorders Programs
Today, we’re going to go through some simple, tangible ways you can help put an end to homelessness in your community.
The National Bleeding Disorders Foundation (NBDF) is alerting the community to updated information from Takeda Pharmaceutical Company regarding the discontinuation timelines for HEMOFIL® M and RECOMBINATE®, two therapies used to treat hemophilia A, first announced last year.
The Neil Frick Resources Center (NFRC) is excited to announce new 2026 scholarship opportunities available to the bleeding disorders community.
If you’re looking for cool ways to donate your gently used items, check out this list of things you can and should donate, and some unique ideas of where to give them.
CSL Behring, the biopharmaceutical company behind the hemophilia B gene therapy HEMGENIX ® (etranacogene dezaparvovec-drlb), announced on March 17, 2026, a temporary global stockout of the therapy. This disruption means that some individuals in countries where HEMGENIX is commercially available may experience delays in accessing treatment.
The National Bleeding Disorders Foundation (NBDF), a leading nonprofit supporting people with bleeding disorders, is proud to congratulate Matthew Delaney, government relations manager, on being named to City & State New York’s 2026 Albany 40 Under 40, an annual list recognizing rising stars in New York State government, politics, and public service.
A Personal Connection to the Bleeding Disorders Community
Federal:
NBDF Wraps Up Another Successful Washington Days
If you’re still not sure what you’re doing over spring break, check out these ideas for how you can have fun and give back.
This National Women’s History Month, you can honor women who have strived to make a difference in the world, along with women in your community today.
Did you know you can give back by supporting small businesses? Here are some hows, whys and benefits of supporting small businesses for your altruistic lifestyle.
The National Bleeding Disorders Foundation (NBDF) is pleased to announce a new matching grant partnership with Save One Life that will double the community’s impact for children living with bleeding disorders, including hemophilia A, hemophilia B, and von Willebrand disease in developing countries.
Pathway to Cures (P2C), the venture philanthropy fund of the National Bleeding Disorders Foundation (NBDF), is pleased to announce the appointment of Michael Recht, MD, PhD, MBA, as chief medical and scientific advisor.
BioMarin Pharmaceutical Inc. has announced that it has decided to pull the hemophilia A gene therapy ROCTAVIAN (valoctocogene roxaparvovec-rvox) from the United States market.
The month of February reminds us to seek out stories and histories, and recognize the significance of black history. Take these ideas to heart and practice them as you honor Black History Month.
The National Bleeding Disorders Foundation (NBDF) mourns the passing of Lynn M. Malec, MD, MSc, a physician, researchers, and champion of the bleeding disorders community.
Employers are looking for more than just a good employee; they want someone with experience, good people skills and who stands out from the crowd. Make your resume jump out by adding volunteer experience.
This Valentine’s Day, give love to others by living an altruistic lifestyle and giving back. Try out some of these Valentine’s Day tips to truly see love blossom in your life.
FY 2026 Funding Update
Last week, the House of Representatives passed the final fiscal year (FY) 2026 appropriations bills. This includes the FY26 Labor, Health and Human Services appropriations bill, which provides funding for the federal health agencies. There were big wins in the bill for the bleeding disorders community, including:
FY 2026 Funding Update
Last week, the House of Representatives passed the final fiscal year (FY) 2026 appropriations bills. This includes the FY26 Labor, Health and Human Services appropriations bill, which provides funding for the federal health agencies. There were big wins in the bill for the bleeding disorders community, including:
With the deep cold, consistent darkness and long hours spent indoors, winter can be a pretty difficult season to get through, and it can often affect our mood.
