Researchers Look at Impact of Factor X Deficiency on Patients/Caregivers
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
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
Prophylactic Therapy for Glanzmann Thrombasthenia Moves Towards Clinical Trials
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
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
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
A Great Opportunity to Learn More About Rare Platelet and Bleeding 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
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
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: