Government Relations Update - March 2026
Government Relations Update - March 2026
Federal:
Strong Support for FY27 Funding for Federal Bleeding Disorders Programs
National Bleeding Disorders Foundation’s Matt Delaney Named City & State New York’s 2026 Albany 40 Under 40 List
National Bleeding Disorders Foundation’s Matt Delaney Named City & State New York’s 2026 Albany 40 Under 40 List
Government Relations Manager recognized as a rising star in New York State politics and advocacy, a journey that began with NBDF programs.
Government Relations Update – February 2026
Government Relations Update – February 2026
Success at NBDF's Washington Days, FY 2026 Funding Package, and leadership changes at HHS.
NBDF Honors the Life of Lynn Malec, MD, MSc
NBDF Honors the Life of Lynn Malec, MD, MSc
The bleeding disorders community mourns the loss of a beloved physician, researcher, and friend.
Interim Data for Investigational Sub-Q VWD Therapy Presented at ASH
Interim Data for Investigational Sub-Q VWD Therapy Presented at ASH
VGA039 is a subcutaneous therapy designed to target the clot regulating protein known as Protein S to regulate excessive clotting and coagulation in people with all subtypes of VWD.
IHS Hosts New Webinar Series to Tackle Clinical Issues in Bleeding Disorders
IHS Hosts New Webinar Series to Tackle Clinical Issues in Bleeding Disorders
The Irish Haemophilia Society is hosting a series of clinical webinars on key topics developed for healthcare providers practicing in the global bleeding disorders community.
Star Therapeutics Announces New Financing for Investigational VWD Treatment
Star Therapeutics Announces New Financing for Investigational VWD Treatment
VGA039 is a subcutaneous monoclonal antibody therapy designed to target Protein S as a means of restoring proper blood clotting in people with all types of VWD.
Five Athletes, One Mission: Meet Team NBDF
Five Athletes, One Mission: Meet Team NBDF
Get to know the inspiring runners who are challenging themselves by running the TCS New York City Marathon, and finding inspiration in the bleeding disorders community along the way.
New Approval Expands Indication for Recombinant VWD Therapy
New Approval Expands Indication for Recombinant VWD Therapy
FDA expands VONVENDI approval to include prophylaxis for adults with von Willebrand disease and pediatric on-demand use, advancing care across all VWD types.
Government Relations Update - August 2025
Government Relations Update - August 2025
NBDF advocates for bleeding disorders care and coverage—BDC 2025 highlights, federal policy updates, Medicaid privacy, insurance reforms, and state actions.
Spotlight on Be Biopharma, a Pathway to Cure’s Portfolio Company
Spotlight on Be Biopharma, a Pathway to Cure’s Portfolio Company
A New Class of Cellular Medicines: The First Engineered B Cell Medicine to Enter Clinical Trials for Hemophilia B
Snapshots from the Final Day of BDC 2025: Energy, Inspiration & Celebration
Snapshots from the Final Day of BDC 2025: Energy, Inspiration & Celebration
See the energy, inspiration, and celebration that closed out the final day of BDC 2025 in our photo highlights.
Taking the Wheel: Rise and Thrive Goal Setting
Taking the Wheel: Rise and Thrive Goal Setting
Learn how the Rise and Thrive workshop at BDC 2025 empowered attendees with SMART goals, balance tools, and strategies to stay motivated.
The Treatment Landscape: New Developments in Bleeding Disorders Care
The Treatment Landscape: New Developments in Bleeding Disorders Care
Discover new therapies for bleeding disorders, from extended half-life products to rebalancing agents and novel devices shared at BDC 2025.
Community Comes Together at BDC 2025 Opening Day
Community Comes Together at BDC 2025 Opening Day
Families, providers, and community members kicked off the first day with energy and connection. See highlights from our vibrant community kickoff.
Defining Hope, Strength, and Infinite Possibility at BDC 2025
Defining Hope, Strength, and Infinite Possibility at BDC 2025
Ryan Warnall’s moving performance and stories of advocacy, innovation, and community defined the BDC 2025 Opening Session—celebrating progress and looking to the future.
Yes, We Mind the Gap
Yes, We Mind the Gap
Women and girls with bleeding disorders face delays in diagnosis and care. Learn how research and community voices are changing the future of treatment.
Bringing Research to Life: Meet the Poster Abstract Authors
Bringing Research to Life: Meet the Poster Abstract Authors
From quality of life to new therapies, families and researchers came together to share insights and inspire one another.
Kicking Off the 77th Annual Bleeding Disorders Conference
Kicking Off the 77th Annual Bleeding Disorders Conference
The National Bleeding Disorders Foundation’s (NBDF) 77th Annual Bleeding Disorders Conference (BDC) is here! Learn, connect, and explore the latest in care, research, and community support.
VWD Masterclass at BDC 2025: Insights & Treatments
VWD Masterclass at BDC 2025: Insights & Treatments
Learning about von Willebrand disease at NBDF’s VWD Masterclass: diagnosis, treatment history, therapies, and community perspectives.
Data That Changes Lives: How Patient Registries Drive Research
Data That Changes Lives: How Patient Registries Drive Research
Discover how patient registries like ATHN, Community Counts, and NBDF’s Community Voices in Research (CVR) turn lived experiences into data that improves care, drives therapies, and advances research.
An Excellent Celebration: Honoring the 2025 NBDF Award Recipients
An Excellent Celebration: Honoring the 2025 NBDF Award Recipients
Discover the winners of NBDF’s 2025 Awards of Excellence, honoring volunteers, providers, researchers, advocates, and leaders driving progress in the bleeding disorders community.
Exhibitor Spotlight: Spark Biomedical Selected for Wellcome Leap’s Program to Reduce Heavy Menstrual Bleeding
Exhibitor Spotlight: Spark Biomedical Selected for Wellcome Leap’s Program to Reduce Heavy Menstrual Bleeding
Spark Biomedical is developing innovative solutions to shorten the time it takes women with heavy menstrual bleeding to get effective treatment and care.
Government Relations Update - July 2025
Government Relations Update - July 2025
Explore the latest updates on federal budget reconciliation, healthcare lawsuits, and state-level policy changes impacting bleeding disorders. Learn how NBDF is advocating for access, funding, and patient protections.
Medicaid Data Shared with Immigration Authorities
Medicaid Data Shared with Immigration Authorities
Joint Statement from NBDF and HFA on Patient Privacy
Pathway to Cures Welcomes Dr. Sylvia Fong
Pathway to Cures Welcomes Dr. Sylvia Fong
The esteemed researcher joins the Scientific Advisory Group
National Research Blueprint Becomes Bleeding Disorders Research Collaborative
National Research Blueprint Becomes Bleeding Disorders Research Collaborative
New name reflects community leadership and a shift from planning to action
Literature Review Reaffirms Clinical Relevance of Von Willebrand Disease Guideline
Literature Review Reaffirms Clinical Relevance of Von Willebrand Disease Guideline
A comprehensive literature review was conducted to ensure that the von Willebrand disease guidelines were still clinically appropriate and informed by the research described in more current peer-reviewed papers.
In Memoriam: Carol Kasper, MD
In Memoriam: Carol Kasper, MD
Dr. Kasper was a pioneer in bleeding disorders treatment and research and a lifelong champion for the community.
NBDF Statement on Passage of HR 1
NBDF Statement on Passage of HR 1
Congress just passed the “One Big Beautiful Bill Act,” with major implications for Medicaid and ACA coverage.
Investigational Data on VWD and Glanzmann Thrombasthenia Therapies Presented at ISTH
Investigational Data on VWD and Glanzmann Thrombasthenia Therapies Presented at ISTH
Hemab Therapeutics presented clinical and preclinical stage data associated with two of their investigational therapies - Sutacimig (formerly HMB-001) and HMB-002.
Pathway to Cures – Investing in Innovation and Access
Pathway to Cures – Investing in Innovation and Access
A new way to manage symptoms of heavy menstrual bleeding is on the horizon.
New Accredited Activity Explores Individualized Care for von Willebrand Disease Patients
New Accredited Activity Explores Individualized Care for von Willebrand Disease Patients
This enduring activity is designed for nurses, nurse practitioners, physician assistants, and other healthcare professionals involved in the care of people with von Willebrand disease.
NBDF’s Keri Norris Finalist for Fierce Healthcare Award
NBDF’s Keri Norris Finalist for Fierce Healthcare Award
Dr. Norris has been recognized for her transformative work advancing health access in the inheritable blood and bleeding disorders community.
UPDATE: NBDF’s Venture Philanthropy Fund: Pathway to Cures
UPDATE: NBDF’s Venture Philanthropy Fund: Pathway to Cures
Through investment and partnership, Pathway to Cures encourages early-stage biotech companies to develop treatments that have the potential to improve the lives of people in our community.
NFRC Features von Willebrand Disease Resources
NFRC Features von Willebrand Disease Resources
NBDF's Neil Frick Resource Center is highlighting von Willebrand disease resources for healthcare providers and affected individuals. Explore these resources today!
Paper Finds Bone Health Screening Rates at HTCs Represent Clinical Care Gap
Paper Finds Bone Health Screening Rates at HTCs Represent Clinical Care Gap
A newly published journal article examined current practices of HTCs for screening and assessing bone health in people with hemophilia and von Willebrand disease.
First Patient Dosed with Investigational Sub-Q Therapy for von Willebrand Disease
First Patient Dosed with Investigational Sub-Q Therapy for von Willebrand Disease
The patient was administered HMB-002 at Richmond Pharmacology in London.
Investigational Sub-Q Von Willebrand Disease Therapy Put on Fast Track
Investigational Sub-Q Von Willebrand Disease Therapy Put on Fast Track
The FDA’s Fast Track designation is meant to facilitate the development and expedite the review of drugs that treat a broad range of serious conditions and address an unmet medical need.
Star Therapeutics Presents Data on Investigational VWD Therapy
Star Therapeutics Presents Data on Investigational VWD Therapy
VGA039 is a subcutaneously-delivered monoclonal antibody therapy designed to target Protein S as a means of restoring proper blood clotting in people with all types of von Willebrand disease.
New Study Looks at GI Bleeding in von Willebrand Disease
New Study Looks at GI Bleeding in von Willebrand Disease
The authors of this new paper conducted a retrospective medical chart review focused on GI bleeding in von Willebrand disease patients, which poses significant challenges for clinicians.
All About HTCs
In this video, you will hear about how to prepare for a visit to your HTC, or Hemophilia Treatment Clinic. You will also learn a bit about the different healthcare providers available to you at an HTC.
Communicating with a Hematologist
In this video, you will hear about how to prepare for a visit with your hematologist and how to advocate for your needs to get the best possible care.
Communicating with an OB/GYN
In this video, you will hear about how to prepare for a visit with your gynecologist and how to advocate for your needs to get the best possible care.
Communicating with a Healthcare Provider
In this video, you will hear about how to prepare for a visit with your healthcare provider and how to advocate for your needs to get the best possible care.
Todo Sobre los HTC
En este vídeo, le explicaremos cómo prepararse para una visita a su HTC, o Clínica de Tratamiento de la Hemofilia. También aprenderá un poco acerca de los diferentes proveedores de atención médica disponibles para usted en un HTC.
Hablando con un Hematólogo
En este vídeo, le explicaremos cómo prepararse para una visita con su hematólogo y cómo defender sus necesidades para obtener la mejor atención posible.
Hablando con un Ginecólogo Obstetra
En este vídeo, aprenderás a prepararte para una visita al ginecólogo y a defender tus necesidades para recibir la mejor atención posible.
Hablando con un Profesional Médico
En este vídeo le explicamos cómo prepararse para una visita al médico y cómo defender sus necesidades para recibir la mejor atención posible.
Consejos para Traducción e Interpretación
En este vídeo, aprenderás un poco más sobre betteryouknow.org, concretamente sobre los distintos recursos imprimibles disponibles en el sitio web y cómo utilizarlos mejor.
Recursos Para Usted
¿Cómo puede betteryouknow.org satisfacer mejor sus necesidades? En este vídeo le mostraremos este sitio web y le indicaremos qué páginas pueden resultarle más útiles en los distintos momentos de su diagnóstico.
Sangrando Qué
¿Qué son los trastornos hemorrágicos? En este vídeo aprenderás qué son los trastornos hemorrágicos, sus signos y síntomas, y por qué es importante buscar atención médica.
Lo Que Viene Despues
Tiene signos y síntomas de un trastorno hemorrágico, ¿y ahora qué? En este vídeo, le explicaremos los siguientes pasos para buscar un diagnóstico de trastorno hemorrágico que le ayude a recibir la atención que necesita.
More From Betteryouknow.org
In this video, you will learn a bit more about betteryouknow.org, specifically more about the various printable resources available on the website and how to best use them.
What Betteryouknow.org Has for You
How can betteryouknow.org best serve your needs? In this video, you’ll get a tour through this website, with pointers on which webpages can be most helpful throughout the different points in your diagnostic journey.
Bleeding What?
What even are bleeding disorders? In this video, you’ll learn about what bleeding disorders are, their signs and symptoms, and why it’s important to seek out care.
What's Next?
You have signs and symptoms of a bleeding disorder – what now? In this video, we will walk through the next steps in seeking out a bleeding disorder diagnosis to ultimately help you receive the care you need.
Bleeding Disorders Conference 2025
-
Aurora, Colorado
Attention Clinicians! New Bleeding Disorders Education Available from IHS
Attention Clinicians! New Bleeding Disorders Education Available from IHS
These new medical-based webinars will speak to key topics relevant to the care of patients with inherited bleeding disorders.
WTAE-TV Feature: Copay Accumulators – Who Really Benefits?
WTAE-TV Feature: Copay Accumulators – Who Really Benefits?
In an NBDF interview, Bill Robie, Senior Director of Government Relations, highlighted the ongoing challenges of living with Von Willebrand disease, affecting 3M Americans.
Von Willebrand Emergency Care Manual Now Available in Spanish
Von Willebrand Emergency Care Manual Now Available in Spanish
The manual is meant to be a reference point for emergency department staff who are not very familiar with von Willebrand disease
Takeda's Voluntary Withdrawal: Alert on Misprinted Labels for VONVENDI®
Takeda's Voluntary Withdrawal: Alert on Misprinted Labels for VONVENDI®
Takeda announces a voluntary withdrawal for 650 IU VONVENDI® due to misprinted labels showing incorrect expiration dates.
Yale Researchers Explore the Possibilities of von Willebrand Factor
Yale Researchers Explore the Possibilities of von Willebrand Factor
Explore groundbreaking research from Yale School of Medicine on von Willebrand factor (VWF) and its role in bleeding disorders.
FDA Grants Expanded Approval to Wilate® for Prophylaxis in All Types of VWD
FDA Grants Expanded Approval to Wilate® for Prophylaxis in All Types of VWD
Octapharma’s human plasma-derived von Willebrand Factor (VWF)/Factor VIII replacement product Wilate® has been granted expanded approval for prophylaxis by the U.S. Food and Drug Administration (FDA) to include all types of von Willebrand disease (VWD).
Study Results Encourage Discussion of Therapeutic Options for VWD Patients with Menorrhagia
Study Results Encourage Discussion of Therapeutic Options for VWD Patients with Menorrhagia
While the majority of women with von Willebrand disease (VWD) will experience heavy menstrual bleeding (HMB) often associated negative impacts on overall health and quality of life, available data relevant to effective treatment is limited.
Gynecologists Have Significant Part to Play in Shrinking Diagnostic Gaps
Gynecologists Have Significant Part to Play in Shrinking Diagnostic Gaps
People with inheritable bleeding disorders who have the potential or ability to menstruate will likely experience especially heavy menstrual bleeding in their lifetime.
Inequities in Thrombosis and Hemostasis Lab Testing the Focus of Illustrated Review
Inequities in Thrombosis and Hemostasis Lab Testing the Focus of Illustrated Review
Explore a review on biases in laboratory reference intervals for thrombosis and hemostasis, highlighting disparities and action items for health equity.
Updates on Generic Desmopressin Product
Updates on Generic Desmopressin Product
Stay informed about the availability and insights on cost, access, and challenges related to the generic desmopressin-based nasal spray. Learn more at NBDF.
Aminocaproic Acid Manufacturer Shuttered Though Not Expected to Trigger Shortage
Aminocaproic Acid Manufacturer Shuttered Though Not Expected to Trigger Shortage
Akorn Pharmaceuticals' bankruptcy won't cause a shortage. Discover its role in treating bleeding disorders and its ongoing production status.
Study Suggests Significant Rates of Depression and Anxiety for Individuals with VWD
Study Suggests Significant Rates of Depression and Anxiety for Individuals with VWD
New study shows significant depression and anxiety rates in von Willebrand disease patients. Learn about the impact and the need for mental health screening.
The VWD Guidelines and Me: Points of Shared Decision-Making
The new VWD guidelines were published in 2020 and heavily integrate the patient voice. But how can you use these in your conversations with healthcare professionals? This session will take a deeper dive into the specific recommendations, where patients and healthcare professionals need to decide together on the best plan of care. You will learn essential skills in shared decision-making to advocate for the care you need.
Bone Health in VWD and Hemophilia Carriers the Focus of Retrospective Study
Bone Health in VWD and Hemophilia Carriers the Focus of Retrospective Study
The study looked at the prevalence and risk factors of osteoporosis, osteoarthritis, and bone fractures.
Public Health for Blood Disorders Series Now Available Online!
Public Health for Blood Disorders Series Now Available Online!
This series was designed to inform and engage the community about the ongoing programming and initiatives of CDC-funded groups that serve those impacted by rare blood disorders.
VWD: The Realities of Your Period
NBDF provides free quality education on issues that matter to the bleeding disorders community. This video is on vwd: the realities of your period
Basics of VWD
NBDF provides free quality education on issues that matter to the bleeding disorders community. This video is on the basics of vwd
VWD PreCon - Sponsored by CSL Behring- A New Horizon: The VWD Guidelines Working For You
NBDF provides free quality education on issues that matter to the bleeding disorders community. This video is on the vwd guidelines: are they working for you
Takeda Announces Approval of Prophylactic Indication for VWD Therapy
Takeda Announces Approval of Prophylactic Indication for VWD Therapy
Takeda recently announced that the U.S. Food and Drug Administration (FDA) has approved VONVENDI® for routine prophylaxis to reduce the frequency of bleeding episodes in adults with severe Type 3 von Willebrand disease (VWD) receiving on-demand therapy.
Clinical Study and New Website to Focus on von Willebrand Disease and Pregnancy
Clinical Study and New Website to Focus on von Willebrand Disease and Pregnancy
This new study was developed to increase understanding of how best to manage bleeding during delivery and the postpartum period in women with VWD.
New Data Analysis Sheds Light on Bleeding Patterns in Young VWD Patients
New Data Analysis Sheds Light on Bleeding Patterns in Young VWD Patients
The authors of this study focused primarily on birth characteristics, bleeding episodes, and complications.
NHF Responds to STIMATE® Production Update
NHF Responds to STIMATE® Production Update
CSL Behring announced that the company’s distribution agreement with Ferring Pharmaceuticals for STIMATE® nasal spray recently expired and will not be renewed effectively removing this medication as a valuable treatment opti
May 2021 Wednesday Webinars
May 2021 Wednesday Webinars
NHF's Wednesday Webinars for May 2021 will focus on Women's Health Month, featuring topics of interest to both patients and healthcare providers who are interested in issues faced by women with inheritable blood disorders.
VWD Pre-Con
The von Willebrand disease (VWD) pre-conference brings together the VWD community to connect in a lively, engaging and supportive educational environment. This year, we will focus on the elements of reconnecting, rebuilding and refocusing as a community. We will explore the many ways that we as a community can help raise awareness of VWD and help those who are unaware of their status. We’ll also discuss new medical updates and NHF’s course of action with VWD. Sponsored by CSL Behring.
The NEW VWD Guidelines
2020 is the year that VWD guidelines will be announced. This will be an opportunity to learn, explore, and understand the new measures for treatment, diagnosis, and protocols.
Basics: VWD
This session will review the signs and symptoms of von Willebrand disease, discuss genetics and inheritance patterns, and define and compare the three types of VWD
New Guidelines on the Diagnosis and Management of VWD
New Guidelines on the Diagnosis and Management of VWD
These guidelines are an important step in our quest to address the difficulties individuals go through to obtain an accurate, timely diagnosis, and appropriate treatment.
Small Study Looks at Use of Epidural Analgesia During Labor in VWD Type 1
Small Study Looks at Use of Epidural Analgesia During Labor in VWD Type 1
A research abstract presented at the recent Thrombosis & Haemostasis Summit of North America 2020 Virtual Conference suggested that epidural analgesia may be a safe option for pregnant women with von Willebrand disease (VWD) type 1, provided clotting factors are maintained at certain levels.
Von Willebrand Disease
Learn about Von Willebrand Disease (VWD), an inheritable bleeding disorder affecting millions in the US. Explore symptoms, types, diagnosis & treatment options.
Von Willebrand Disease
NBDF is dedicated to providing education & support for individuals living with Von Willebrand Disease (VWD). Explore educational publications, workshops & more.
Comment Period for VWD Clinical Practice Guidelines Open
Comment Period for VWD Clinical Practice Guidelines Open
NHF is seeking comments on draft ASH ISTH NHF WHF clinical practice guidelines on VWD Diagnosis & Management.