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).
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.
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.
Community experts will discuss clinical research studies and why they are essential to the ultra-rare bleeding disorders community.
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.
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
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.
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.
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.
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.
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
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
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
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
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
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
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
*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:
