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.
Trial Results for Investigational Glanzmann Thrombasthenia Therapy Presented at ASH
Trial Results for Investigational Glanzmann Thrombasthenia Therapy Presented at ASH
Sutacimig is a laboratory-engineered bispecific antibody being developed as the first-ever prophylactic treatment for individuals with Glanzmann thrombasthenia.
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.
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.
Celebrating Community at BDC 2025: Strength in Diversity
Celebrating Community at BDC 2025: Strength in Diversity
At BDC 2025, NBDF hosted sessions and networking hours that honored identity, built connections, and reminded attendees that no one walks alone.
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.
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
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.
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.
New Jersey Chapter Fights for Critical State Legislation
New Jersey Chapter Fights for Critical State Legislation
Stephanie Lapidow, Executive Director of the Hemophilia Association of New Jersey (HANJ), is leading the charge to protect patients from predatory insurance practices through critical state legislation (S-3818/A-5217).
HANDI Highlights Looks Towards Rare Disease Day
HANDI Highlights Looks Towards Rare Disease Day
Included in this edition are educational booklets, articles, and video recordings of substantive presentations on topics related to rare factor deficiencies and inherited platelet disorders.
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
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Aurora, Colorado
New Review Weighs Bleeding and Clotting Risk in ITP
New Review Weighs Bleeding and Clotting Risk in ITP
Primary immune thrombocytopenia is a rare autoimmune disorder that causes a significant reduction in platelets, which are necessary for effective coagulation.
Takeda Announces Interim Trial Results for Investigational ITP Therapy
Takeda Announces Interim Trial Results for Investigational ITP Therapy
Primary immune thrombocytopenia is a rare disease autoimmune disorder that causes a significant reduction in platelets and bleeding
Researchers Look at Impact of Factor X Deficiency on Patients/Caregivers
Researchers Look at Impact of Factor X Deficiency on Patients/Caregivers
Hereditary factor X deficiency is an ultra-rare bleeding disorder that occurs in approximately 1 in 500,000 to 1 in a million people across the globe.
FDA Approves Recombinant Therapy for Congenital Thrombotic Thrombocytopenic Purpura
FDA Approves Recombinant Therapy for Congenital Thrombotic Thrombocytopenic Purpura
The U.S. Food and Drug Administration (FDA) has approved a recombinant enzyme replacement therapy for people with congenital thrombotic thrombocytopenic purpura (cTTP), an ultra-rare blood disorder.
Start the Conversation: From Patient to Physician
Start the Conversation: From Patient to Physician
Dr. Aaron Chen shares his journey from thalassemia patient to physician, highlighting how his rare disorder influenced his career and patient care approach.
Ultra-Rares: What's in a Research Study
Community experts will discuss clinical research studies and why they are essential to the ultra-rare bleeding disorders community.
Current Treatments for Ultra-Rare Bleeding Disorders
This session will discuss current treatment options for rare factor deficiencies and platelet dysfunctions.We Will provide practical tips about effective discussion with your hematology care provider.
Rare Factor X Deficiency Survey Shows Disparity in Care
Rare Factor X Deficiency Survey Shows Disparity in Care
Initial data from the survey were presented at the recent Thrombosis and Hemostasis Summit of North America and NHF's Bleeding Disorders Conference last week in Houston.
Prophylactic Therapy for Glanzmann Thrombasthenia Moves Towards Clinical Trials
Prophylactic Therapy for Glanzmann Thrombasthenia Moves Towards Clinical Trials
Glanzmann Thrombasthenia is an ultra-rare inherited bleeding disorder that is characterized by poorly functioning platelets.
Ultra Rare Bleeding Disorders: Hot and New Topics in Research
NBDF provides free quality education on issues that matter to the bleeding disorders community. This video is on ultra rare bleeding disorders: hot and new topics in research
New Paper Highlights Integrated Care Model and the National HTC Network
New Paper Highlights Integrated Care Model and the National HTC Network
This paper provides a comprehensive description of the critical services and dynamic coordinating capacity of HTCs within a regional and national framework.
Rares Series: Reproductive Health: The Provider Lens
During this session participants will learn from a panel of healthcare providers, including a genetics counselor, obstetrician/gynecologist and hematologist. The panel will discuss topics such as genetic counseling, preparing for pregnancy and birth, partner relationship issues, and more.
Rare Series: A Candid Conversation On Reproductive Health
During this session, participants will learn from a panel of community members who share their experiences on various reproductive health topics. The panel will discuss topics such as family planning, relationship/fertility obstacles, shared decision-making, self-advocacy, educating your child, and more.
Rare Series: Baby Steps Navigating Past the Pandemic
Re-entering society after the COVID19 pandemic, how does it impact mental health, and what are specific implications for the ultra-rare bleeding disorder community?
Rare Series: Current Treatments for Rare Bleeding Disorders
This session will discuss current treatment options for rare factor deficiencies and platelet dysfunctions. It will also provide practical tips about what information will foster an effective discussion with your hematology care provider about your best treatment plan.
Rare Bleeding Disorders
Find valuable resources & support for families living with rare bleeding disorders at NBFF. Access educational events, webinars, publications, workshops & more.
A Great Opportunity to Learn More About Rare Platelet and Bleeding Disorders!
A Great Opportunity to Learn More About Rare Platelet and Bleeding Disorders!
This webinar explores the diagnosis and clinical management of patients with rare inherited bleeding and platelet disorders.
Genetic Analysis and Other Diagnostic Tools for Rare Bleeding and Platelet Disorders
NOT AVAILABLE FOR CREDIT
This Second Annual Victor Grifols Roura Medical Preconference Symposium explores the diagnosis and clinical management of patients with rare inherited bleeding and platelet disorders. Faculty will be reviewing the treatments currently available to manage bleeding in these patients and share significant advances being made to improve genetic diagnosis, including valuable insights on how to interpret rare platelet gene panels.
This symposium was made possible only through the generous support of Grifols.
Basics of Glanzmann’s Thrombasthenia Bernard-Soulier Syndrome
This pre-recorded session is a part of the virtual Rare Bleeding Disorders Conference. It will explain the diagnosis, symptoms and treatment options of both Glanzmann's Thrombasthenia and Bernard-Soulier Syndrome.
Speaker: Jim Munn, BSN, RN
Basics of Factor 5 Deficiency
This pre-recorded session will explain the diagnosis, symptoms and treatment options of Factor 5 Deficiency, Combined Factor 5 and Factor 8 Deficiency and Factor Five Short, also known as east Texas Bleeding Disorder.
Speaker: Sweta Gupta, MD
Basics of Factor 13 Deficiency
This pre-recorded session is a part of the virtual Rare Bleeding Disorders Conference. It will explain the diagnosis, symptoms and treatment options of Factor 13 Deficiency.
Speaker: Suchitra Acharya, MD
Basics of Factor 7 Deficiency
This pre-recorded session is a part of the virtual Rare Bleeding Disorders Conference. It will explain the diagnosis, symptoms and treatment options of Factor 7 Deficiency.
Speaker: Suchitra Acharya, MD
Basics of Factor 11 Deficiency
This pre-recorded session is a part of the virtual Rare Bleeding Disorders Conference. It will explain the diagnosis, symptoms and treatment options of Factor 11 Deficiency.
Speaker: Danielle Nance, MD
Basics of Factor 10 Deficiency
This pre-recorded session is a part of the virtual Rare Bleeding Disorders Conference. It will explain the diagnosis, symptoms, and treatment options of Factor 10 Deficiency.
Basics of Rare Platelet Disorders
This pre-recorded session is a part of the virtual Rare Bleeding Disorders Conference. It will explain the diagnosis, symptoms, and treatment options of rare platelet disorders.
Speaker: Peter Kouides, MD
A Moment of Reflection
This recorded session was a part of the 2020 virtual Rare Bleeding Disorders Conference. This mid-week boost will explain the practice of meditation, with reflective meditation exercises
Reproductive Health and Rare Bleeding Disorders
This recorded session was a part of the 2020 virtual Rare Bleeding Disorders Conference. In this session, participants will learn the considerations and components of their reproductive health in relation to living with a rare bleeding disorder.
Speakers:
Danielle Nance, MD
Suchitra Acharya, MD
Disorders of Fibrinogen
*ANCC
Moderator:
Kimberly Hurdstrom, RN, BSN
Hemophilia & Thrombosis Center, University of Colorado School of Medicine
University of Colorado Denver
Speaker:
Marilyn Manco-Johnson, MD
Director, Hemophilia & Thrombosis Center
Professor, Pediatrics Hematology-Oncology
University of Colorado School of Medicine
University of Colorado Denver
By the end of this session, the participant should be better able to:
Two Deaths Reported in AAV-Based Gene Therapy Trials for Rare Muscle Disorder
Two Deaths Reported in AAV-Based Gene Therapy Trials for Rare Muscle Disorder
NHF has learned of the recent death of a patient who had been participating in a gene therapy clinical trial for a rare muscle disorder known as X-Linked Myotubular Myopathy.
Factor XIII
Learn about Factor XIII deficiency (Fibrin Stabilizing Factor deficiency). Explore diagnosis, symptoms, genetics, treatments and available therapies.
Factor XII
Learn about the factors related to Factor XII deficiency (Hageman Factor deficiency). Explore diagnosis, symptoms, genetics, and treatment options.
Factor XI
Learn about Factor XI deficiency (Hemophilia C, PTA deficiency, Rosenthal Syndrome). Explore diagnosis, symptoms, genetics, treatment and available therapies.
Factor X
Explore symptoms, genetics, and treatments for Factor X deficiency (Stuart-Prower Factor deficiency). Learn about diagnosis, Coagadex®, and available therapies.
Factor VII
Explore symptoms, genetics, and treatments for Factor VII deficiency (Labile Factor or Proconvertin deficiency). Learn about diagnosis and available therapies.
Factor V
Learn about Factor V deficiency, a rare bleeding disorder. Symptoms, genetics, and treatment options for FV deficiency, including combined FV/FVIII deficiency.
Factor II
Understanding Factor II deficiency (Prothrombin deficiency), a rare bleeding disorder. Learn about the symptoms, genetics, and treatment options.
Factor I
Learn about Factor I deficiency, a rare fibrinogen disorder. Symptoms, genetics, and treatment for afibrinogenemia, hypofibrinogenemia & dysfibrinogenemia.
Inherited Platelet Disorders
Discover different types of inherited platelet disorders, their symptoms & find support for those with platelet disorders. Learn how to manage these conditions.
Other Factor Deficiencies
Discover ultra-rare bleeding disorders, including Factor I, II, V, VII, X, XI, XII, and XIII deficiencies. Learn about symptoms, treatments, and find support.