From Principles to Practice: Preparing for the Advent of Gene Therapy

This activity is intended for hematologists, pediatricians, primary care physicians, nurses, and nurse practitioners. It is part of Medscape’s series “Clinical Advances in Gene Therapy for Hemophilia.” Presented through a collaboration between Medscape and the National Hemophilia Foundation, the series includes various discussions relevant to the latest data on gene therapy as well as the practicalities associated with using gene therapy for hemophilia.

Just Do It... or Don't

Given relatively limited literature specifically on return to physical activity after injury for people with bleeding disorders, many physical therapists may lack competence in developing tailored recovery plans and providing prudent guidance to patients and their families. We will consider and apply recommended guidelines for return to activity and sport, critically appraise existing return to activity evaluation tools and applications, and compare and contrast return-to-work evaluation tools and applications for people with bleeding disorders.

Nipping Pain in the Bud: The Science Behind Medical Marijuana

Patients are increasingly turning to cannabis-related pharmaceuticals for pain relief and management. This session will address the available evidence, and the negative or positive hype from the facts, and discuss the need for more research. Dispensation, delivery and dose control will be discussed as well as implications for the bleeding disorders community, ranging from pain management to fall risk in our aging hemophilia population.

Hemo 201: What to Do When You Have No Clue

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.

Pain Management: Tool Box Not a Pill Box

The session will discuss pain related to bleeding disorders in the developmental stages and how infants, children and adolescents with bleeding episodes experience, express and cope with pain. It will review the latest research on management and assessment of pain in children and provide guidance on pain education for families and caregivers. Treatment and intervention strategies for physical therapists will be reviewed and followed by a group discussion.

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.

Public Health for Women & Girls

NOT AVAILABLE FOR CREDIT

After a successful public health offering at NHF’s 2019 BDC, NHF decided to collaborate with several national blood disorder advocacy organizations to deliver two public health sessions for chapters and consumers. This session will address women’s issues in public health and was created by the National Blood Clot Alliance, Center for Inherited Bleeding Disorders, Cooley’s Anemia Foundation, Foundation for Women and Girls with Blood Disorders, NHF, and HFA.

Marijuana: Breaking it Down, the Good, the Bad, and the Consumption

*ASWB

Moderators:

Kathaleen Schnur, LSW
Social Worker, Hemophilia Center of Western Pennsylvania

Alfredo A. Narvaez, Jr., MSW, LMSW
Social Worker, Louisiana Comprehensive Hemophilia Center
Tulane University Medical Center

Speaker:

Khalid Namoos
Medical Fellow, UCLA David Geffen School of Medicine

By the end of this session, the participant should be better able to:

Prevalence of Depression and/or Anxiety in Children Seen at the Arizona HTC’

*ASWB

Moderators:

Amy Schadewald, MSW, LICSW, ACM
Clinical Social Worker, M Health Fairview Center for Bleeding and Clotting Disorders

Connie Thibodeaux, MSW, LCSW, BAC
Hemophilia Social Work Coordinator
Louisiana Center for Bleeding & Clotting Disorders
Tulane University School of Medicine / Deming Department of Medicine

Speaker:

Ethics: Blurred Boundaries

*ASWB

Moderators:

Kathaleen Schnur, LSW
Social Worker, Hemophilia Center of Western Pennsylvania

Lucy Ramirez, MSW, LCSW
Clinical Social Worker, Rush Hemophilia & Thrombophilia Center

Speaker:

Alana Brunner, LCPC, NCC, CCMHC
Mental Health Therapist
St. Luke’s Psychiatric Wellness

By the end of this session, the participant should be better able to:

Cannabis Applications & Implications

*ANCC

Speaker:

Khalid Namoos
Medical Fellow, UCLA David Geffen School of Medicine

By the end of this session, the participant should be better able to:

  • Compare cannabis formulations and discuss the evidence for their potential use
  • Discuss the evidence for clinical indications for cannabis use
  • Describe the pharmacokinetics and physiological effects of cannabis 

Mild Phenotypes: The Struggle is Real

*ANCC  

Moderator:

Jennifer Donkin, RN, DNP, CPNP, CFNP
Nurse Practitioner
Children's Hospital of Los Angeles

Speakers:

Sharon L. Littig, RN
Clinical Coordinator
Cardeza Foundation Hemophilia Center at Jefferson University

Penni J. Smith, MPA, BSN, RN-BC
Hemophilia/Hematology RN Coordinator
Utah Center for Bleeding and Clotting Disorders
Primary Children’s Hospital  

Today's Technology

*ANCC

Moderator:

Tamara Bullock, RN-BC, BSN
Hemophilia Community Nurse, University of Iowa Hospitals and Clinics

Speakers:

Penny Kumpf, RN-BC, BSN
Von Willebrand Outreach Nurse
Hemophilia of Georgia

Michael DeGrandpre
Creative Director
Hemophilia Federation of America

By the end of this session, the participant should be better able to:

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:

Forging a New Path – Gene Therapy Readiness and HTC Implementation

*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:

Challenging Cases

*ANCC

Moderators:

Sharon L. Littig, RN
Clinical Coordinator
Cardeza Foundation Hemophilia Center at Jefferson University

Jessica Pindilli, BSN, RN
University of Wisconsin Hospital & Clinics
UWHC Comprehensive Program for Bleeding Disorders

Speakers:

Maria Tovar-Herrera, RN-BC, BSN
RN Coordinator
Rush Hemophilia and Thrombophilia Center

Evaluation and Management of Hemophilia in the Emergency Department

This activity is intended for emergency medicine physicians, hematologists, pediatricians, nurses, and other healthcare professionals who manage patients with hemophilia. The goal is to increase understanding of the optimal management of these patients when they present to the emergency department (ED). It was developed through a partnership between Medscape Education, the American College of Emergency Physicians, and the National Hemophilia Foundation.

Upon completion of this activity, participants will:

Moving Beyond Factor: Shifting the Paradigm in Hemophilia Through Gene Therapy

This activity features an international panel of experts that review the science underlying therapy strategies, provide updates on the latest data for therapies in development, and critically evaluate the potential role gene therapy may play in patient care, both now and in the future. It is intended for hematologists, pediatric hematologists, and all members of the clinical care team involved in the care of patients with hemophilia.

Improving Outcomes for Females with Bleeding Disorders in Non-Hematology Health Care Settings

This educational webinar was created to improve the overall knowledge of physicians in evaluating and screening women and girls with heavy menstrual bleeding for a bleeding disorder. The activity is designed to reach those healthcare providers who practice outside of hematology - including registered nurses, other specialists and allied health care providers working in the fields of general medicine, family medicine, internal medicine, pediatrics, obstetrics/gynecology and otolaryngology.

CE Module Part II Focused on VWD and other Bleeding Disorders in Women

This activity, “An Introduction to the Recognition, Appropriate Diagnosis, and Timely Management of VWD and other Bleeding Disorders among Women in Non-Hematology Health Care Settings,”  is the second module in a three-part series entitled Improving Outcomes for von Willebrand Disease and Other Bleeding Disorders in Non-Hematology Health Care Settings. Each webinar in this series has been designed to better educate healthcare providers who do not specialize in hematology.

CE Module Part III Focused on VWD and other Bleeding Disorders in Women

This activity, “Advanced Considerations for the Recognition, Appropriate Diagnosis, and Timely Management of VWD and Other Bleeding Disorders among Women in Non-Hematology Health Care Settings,” is the third module in a three-part series entitled Improving Outcomes for von Willebrand Disease and Other Bleeding Disorders in Non-Hematology Health Care Settings. Each webinar in this series has been designed to better educate healthcare providers who do not specialize in the field of hematology.

CE Module Part I Focused on VWD and other Bleeding Disorders in Men

As the first module in a three-part series entitled Improving Outcomes for von Willebrand Disease and Other Bleeding Disorders in Non-Hematology Health Care Settings, this webinar “Symptom Recognition and Appropriate Early Intervention in Males with von Willebrand Disease” is designed to better educate healthcare providers about the symptoms and clinical management of males with von Willebrand disease.