In a May 27th letter to the hemophilia community, it was confirmed that Spark Therapeutics has been fully integrated into the Roche Group.
The National Bleeding Disorders Foundation is proud to support an important research initiative led by Emily Agen, a genetic counseling graduate student at the University of Michigan, who is
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.
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.
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.
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.
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.
En este vídeo, le explicaremos cómo prepararse para una visita con su hematólogo y cómo defender sus necesidades para obtener la mejor atención posible.
En este vídeo, aprenderás a prepararte para una visita al ginecólogo y a defender tus necesidades para recibir la mejor atención posible.
En este vídeo le explicamos cómo prepararse para una visita al médico y cómo defender sus necesidades para recibir la mejor atención posible.
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.
¿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.
¿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.
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.
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.
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.
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.
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.
Pfizer recently provided new clinical trial updates for their investigational therapy marstacimab.
The HANDI Resources Center Team is pleased to announce new 2024 scholarship opportunities available for the bleeding disorders community!
Findings of a new study have uncovered specific disparities in hemophilia care by focusing on the use of immune tolerance therapy (ITI) in people with hemophilia A and an inhibitor.
Two new documents have been issued by the NBDF’s Medical and Scientific Advisory Council (MASAC), which periodically writes recommendations and advisories on treatment, research, and other general health concerns of the inheritable bleeding disorders community.
Recruitment is now open for Own Your Path- a program for young adult males with hemophilia who are currently in the transition years between 18-29. We know that maintaining adherence to a prophy regimen can have short and long -term health benefits.
On November 22, the U.S. Food and Drug Administration approved Hemgenix (etranacogene dezaparvovec), an adeno-associated virus (AAV) vector-based gene therapy.
FOR IMMEDIATE RELEASE
July 8, 2022
The U.S. Food and Drug Administration (FDA) has accepted CSL Behring’s Biologics License Application (BLA) for priority review of etranacogene dezaparvovec, an investigational gene therapy for hemophilia B.
Newly published data from a phase 3 clinical study suggests that the recombinant factor VIIa bypassing agent (BPA) eptacog beta was used to safely and effectively treat and control bleeding in children with hemophilia A or B with inhibitors, 12 years of age or younger.
FOR IMMEDIATE RELEASE
Media Contact:
Ilana Ostrin
iostrin@hemophilia.org
212-328-3769
April 17, 2022
Dr. Johnny Mahlangu graciously sat down with NHF's CEO Dr. Len Valentino for an informative dialogue to honor Black History Month and World Hemophilia Day. Read these Q&As and watch the video to learn more!
NBDF provides free quality education on issues that matter to the bleeding disorders community. This video is on candid conversations, what do the docs think?
NBDF provides free quality education on issues that matter to the bleeding disorders community. This video is on the advancements in treatment for hemophilia
NBDF provides free quality education on issues that matter to the bleeding disorders community. This video is on gene therapy: where do we go from here
NBDF provides free quality education on issues that matter to the bleeding disorders community. This video is on the basics of hemophilia
My Life, Our Future (MLOF) is a nationwide campaign offering free genetic testing, or genotyping, for people affected by hemophilia.
Shared decision making (SDM), the concept by which patients
A new paper published in The Journal of Haemophilia Prac
In Genentech’s ongoing efforts to transparently communicate with the hemophilia community, we are sharing two updates to the Hemlibra label that were requested by the FDA.
The U.S. Food and Drug Administration (FDA) has partially rescinded a pair of supplemental Biologics License Applications (BLAs) the agency had granted, in error, for two recombinant factor IX products, BeneFIX® (Pfizer) and IXINITY (Aptevo).
These are exciting times in hemophilia research, with many new treatment options on the horizon. Come learn about the latest results of various phases of clinical trials on gene therapy and other new treatment options to see what the future holds for the treatment of hemophilia.
Hemophilia is a uniquely challenging and sometimes perplexing condition for physical therapists to manage and treat. Physical therapists who see patients across the lifespan may manage conditions that range from athletic injuries to frailty. Clinicians often rely on reviewing limited evidence, consulting colleagues, and ultimately critical thinking and best clinical judgment to develop a management plan. This session will outline a framework for different scenarios seen in the clinic and look at six broad management schemes.
What exactly is meant by individualized therapy? What might be the future treatment and quality-of-life implications for hemophilia patients? Learn more about this state-of-the-art approach to care, and how it could improve the health of a person living with hemophilia.
Transcription of "One Size Does Not Fit All: Individualized Therapy"
It is a reality familiar to most adults with hemophilia of a certain age: repeated joint bleeds which subsequently causes joint deterioration, affecting everyday quality of life. But the story does not have to end there. Learn how prophylactic therapy can be used to halt the momentum of degenerative joint damage, decrease pain and help you regain mobility.
Transcription of "The Advantage of Prophylaxis for Adults with Joint Issues"
*CME/ACPE
Moderator/Speaker:
Steven W. Pipe, MD, Faculty Chair
Professor of Pediatrics and Pathology
Laurence A. Boxer Research Professor of Pediatrics and Communicable Diseases,
Pediatric Medical Director, Hemophilia and Coagulation Disorders Program,
Director, Special Coagulation Laboratory,
University of Michigan
Ann Arbor, Michigan
Speakers:
*CME/ACPE
Moderator:
Stacy E. Croteau, MD, MMS
Assistant Professor of Pediatrics, Harvard Medical School Director, Hemophilia/VWD Program, Boston Children's Hospital Medical Director, Boston Hemophilia Center
Dana-Farber/Boston Children's Cancer Center & Blood Disorders Center
Boston, MA
Speakers:
*CME/ACPE
Moderator:
Christopher E. Walsh, MD, PhD
Associate Professor of Medicine, Division of Hematology and Medical Oncology
Icahn School of Medicine at Mount Sinai
Director, Hemophilia Treatment Center, Mount Sinai Hospital
New York, NY
Speakers:
