We are pleased to announce that the National Bleeding Disorders Foundation (NBDF) has been approved for a funding award through the Eugene Washington PCORI Engagement Award Program, an initiative of the Patient-Centered Outcomes Research Institute (PCORI). The funds will support our work in prioritizing and standardizing patient-centered outcomes for women, girls, and people with the potential to menstruate with bleeding disorders.
  

NBDF is excited to inform U.S.-based clinicians and other interested individuals of a new series of virtual educational opportunities organized by our friends at the Irish Haemophilia Society (IHS). The IHS is hosting a series of clinical webinars on key topics developed for healthcare providers practicing in the global bleeding disorders community. 

The National Bleeding Disorders Foundation (NBDF) is delighted to announce that Maximilian (Max) Igielinski from Westlake, Ohio, was selected as the recipient of the 2026 Kevin Child Scholarship (KCS), an annual scholarship for students with hemophilia pursuing post-secondary education. The Child family selected Max as this year's KCS award recipient from among more than 30 applicants. 

The National Bleeding Disorders Foundation (NBDF) announced the official creation of Guam Chapter of the National Bleeding Disorders Foundation.

Advocacy efforts led by the National Bleeding Disorders Foundation (NBDF), in collaboration with the Glanzmann’s Research Foundation and the CHES Foundation, have resulted in a dedicated ICD-10-CM code for Glanzmann thrombasthenia, a rare inherited platelet disorder. The new code, D69.11, will help clinicians, researchers, insurance companies, and public health systems identify Glanzmann thrombasthenia more accurately and better understand the needs of people living with the disorder.

The National Bleeding Disorders Foundation (NBDF) has announced the 2026 recipients of its Judith Graham Pool (JGP) Fellowships. This year's awardees are investigating next-generation hemophilia A gene therapy and hereditary hemorrhagic telangiectasia (HHT), a rare inherited bleeding disorder caused by abnormal blood vessel development. The fellowships fund early-career researchers investigating the causes and treatment of bleeding disorders through basic science and pre-clinical research.

Five years ago, the National Bleeding Disorders Foundation (NBDF) set an ambitious goal: to transform how bleeding disorders research is conducted by ensuring patient voices and experiences are included in every phase, from study design and recruitment to outcomes and implementation.

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.