The National Bleeding Disorders Foundation (NBDF) has been nominated for the Inaugural Prix Galien Patient First Award in Honor of Michael J. Fox by The Galien Foundation, a global institution recognizing groundbreaking achievements in the life sciences. The newly introduced award recognizes excellence in clinical research, clinical trials, and patient-centered care improvement initiatives that embody the principle "No decision for me without me."

The National Bleeding Disorders Foundation (NBDF) has announced its 2026 Excellence Fellowship recipients, recognizing outstanding healthcare professionals whose research aims to improve care and outcomes for people living with bleeding disorders.

Federal:

Wednesday Webinar on Medicaid Work Requirements

The National Bleeding Disorders Foundation (NBDF) honored emerging researcher Paxton Mills with the 2026 Lived Experience Expert of the Year Award at its Bleeding Disorders Conference in Orlando, Florida this August. Paxton is a person who has never let her bleeding disorder define her but instead has used it to inspire her research aspirations and future career.

When Experience Inspires Research

Each year, NBDF honors the incredible individuals who make a difference in the bleeding disorders community. From the advocates who tirelessly push for better access to care, to the providers who go above and beyond for their patients, to the volunteers who ensure that nobody with a bleeding disorder feels alone, NBDF’s Awards of Excellence honor the amazing people and chapters who contribute so much to the betterment of people with bleeding disorders. Our community is stronger because of the work they do. Please join us in celebrating the 2026 recipients of NBDF Awards of Excellence.

The National Bleeding Disorders Foundation (NBDF) was saddened to learn of the death of Dr. Deeksha Katoch, MBBS, MHS, a clinician-investigator at the Yale School of Medicine. She was selected as a NBDF-Takeda Clinical Fellow in 2025.

Mark Skinner, JD was honored with one of the National Bleeding Disorder Foundation’s (NBDF) highest accolades, the Lifetime Achievement Award, at its Bleeding Disorders Conference, held in Orlando, Florida on August 13-15th, 2026.

A Lifetime of Hemophilia Advocacy and Leadership

The National Bleeding Disorders Foundation's (NBDF) impact can be seen across the bleeding disorders community through advocacy, education, research, and programs that support individuals and families with hemophilia, von Willebrand disease, and rare factor disorders at every stage of life. Behind that work is a commitment by the NBDF Board of Directors, a group united by a shared goal of improving the lives of people with bleeding disorders.

Federal: 

Funding for Fiscal Year 2027

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.

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.

Federal:

Medicaid Work Reporting Requirements

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. 

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. 

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.

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.

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.

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.

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.

Federal: 

Strong Support for FY27 Funding for Federal Bleeding Disorders Programs 

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.