Impact of Gene Therapy for Hemophilia on Care Delivery in the Hemophilia Treatment Center
The Science Required to Cure Hemophilia
Social Work Research Fellowship: Defining the HTC Social Worker Role
Moderator/Speaker:
Amy K. Wilson, MSW, LICSW, ACM
Clinical Social Worker
M Health Fairview Center for Bleeding & Clotting Disorders
Speakers:
Kathaleen M. Schnur, MSW, LCSW
Social Worker Hemophilia Center of Western Pennsylvania
Diane Bartlett, LCSW, OSW-C
Social Worker, St. Luke’s Hemophilia Center
Spencer Moorman, MSSW, LCSW
Social Worker, University of Louisville School of Medicine
Nursing Case Studies: Creative Solutions to Patient Care (*ANCC)
Moderators:
Tamara Bullock, RN-BC, BSN
Hemophilia Community Nurse, University of Iowa Hospitals and Clinics
Nancy Inverso, RN
Hemophilia Program Manager
Bronson Hemophilia Treatment Center Kalamazoo, MI
Sharon L. Littig, RN
Clinical Coordinator
Cardeza Foundation Hemophilia Center at Jefferson University
Speakers:
Another Bone to Pick with Hemophilia: Heterotopic Ossification Following a Muscle Bleed
NBDF provides free quality education to healthcare providers in the bleeding disorders community. This video has another bone to pick with hemophilia heterotopic ossification following a muscle bleed
Pelvic Floor Dysfunction and the Bleeding Disorder Patient: More Than Just “Bikini Medicine”
NBDF provides free quality education to healthcare providers in the bleeding disorders community. This video is on the pelvic floor dysfunction and the bleeding disorder patient more than just bikini medicine
Finding the Flow: Development and Implementation of Clinics for Women and Girls with Inherited Blood Disorders (*ANCC)
Moderator:
Kimberly Hurdstrom, RN, BSN, CCCTM
Hemophilia & Thrombosis Center,
University of Colorado School of Medicine
University of Colorado Denver
Speakers:
Anne Harvey, DNP, C-PNP
Pediatric Hematology Nurse Practitioner
Primary Children’s Hospital, Salt Lake City, UT
Genevieve Moyer, MD, M.Sc.
Assistant Professor, Division of Hematology
University of Colorado- Denver
MSKUS Guidelines, Pain Management and Orthopedic Updates
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, NY
Speakers:
Cindy Bailey, PT, DPT, OCS, SCS, ATC
Director of Physical Therapy/OT
Orthopaedic Hemophilia Treatment Center
LA Orthopedic Hospital Rehabilitation Department Los Angeles, CA
Psychosocial Pain Research: Pain Impact and Intervention
Moderators:
Christi Humphrey, LCSW
Social Worker, Hemophilia of Georgia, Inc.
Amy K. Wilson, MSW, LICSW, ACM
Clinical Social Worker, M Health Fairview,
Center for Bleeding & Clotting Disorders
Ashley Parmerlee, MSW, LCSW
Social Worker, Indiana Hemophilia and Thrombosis Center
Speakers:
Angela Lambing, MSN, ANP, GNP NP
Consultant
Wheatley, Ontario CANADA
Venous Thromboembolism, Inherited Thrombophilia, and COVID-19 in the Setting of Inherited Bleeding Disorders (*ANCC)
Moderator:
Kelly Tickle, MSN, APN, PPCNP-BC
Pediatric Nurse Practitioner, Children’s Healthcare of Atlanta
Speaker:
Gary Woods, MD
Assistant Professor of Pediatrics, Emory University School of Medicine
Medical Director of Thrombosis, Associate Director, Stroke Program,
Aflac Cancer & Blood Disorders Center/Children's Healthcare of Atlanta
After completing this activity, the participant should be better able to:
PT-Telehealth in the Time of COVID and Beyond: A New Normal After the Zoombie Apocalypse?
NBDF provides free quality education to healthcare providers in the bleeding disorders community. This video is for pt telehealth in the time of covid and beyond a new normal after the zoombie apocalypse
Kickstart your body part
NBDF provides free quality education to healthcare providers in the bleeding disorders community. This video helps to kickstart your body part
Health Literacy: Helping Patients Navigate and Understand Healthcare Information
Moderator:
Brittany Savage, MSN, AGPCNP-BC
Bleeding Disorders Transition Nurse Practitioner
Indiana Hemophilia and Thrombosis Center Indianapolis, IN
Speaker:
Lisa Littner, MPH, MSW, LISW-S,
CHES Education Specialist
Cincinnati Children’s Hospital Medical Center
Hemophilia Treatment Center, Cincinnati, OH
Tamara Bullock, RN-BC, BSN
Hemophilia Community Nurse
University of Iowa Hospitals and Clinics
Nutrition for Musculoskeletal Health
NBDF provides free quality education to healthcare providers in the bleeding disorders community. This video is on nutrition for musculoskeletal health
Management of Patients with Hemophilia A and Inhibitors in the Era of Non-Factor Therapies (*ANCC)
Moderator:
Kelly Tickle, MSN, APN, PPCNP-BC
Pediatric Nurse Practitioner, Children’s Healthcare of Atlanta
Speaker:
Glaivy Batsuli, MD
Assistant Professor of Pediatrics, Emory University,
Dept. of Pediatrics Pediatric Hematologist
Div. of Pediatric Hematology and Oncology
Aflac Cancer & Blood Disorders Center/Children's Healthcare of Atlanta
Health Equity and Access to HTCs
Moderator:
Len Valentino, MD, President and CEO,
National Hemophilia Foundation
Speakers:
Melissa S. Creary, Ph.D., MPH
Assistant Professor of Health Management & Policy
Senior Director, Office of Public Initiatives
American Thrombosis & Hemostasis Network
Ann Arbor, MI
Judith R. Baker, Dr.PH., MHSA
Public Health Director
Center for Inherited Blood Disorders Orange, CA
Mark Skinner, JD
Institute for Policy Advancement, Washington, DC
Public Health: Aging
NOT AVAILABLE FOR CREDIT
Speakers will discuss a range of topics including new international guidelines for the diagnosis and management of hereditary hemorrhagic telangiectasia (HHT), mental and emotional health challenges in aging thalassemia patients, aging with a bleeding disorder, basics of Medicare, and skilled nursing facilities.
Beyond the Diagnosis: The Impact of Bleeding Disorders on Women & Girls
Moderators:
Kaitlin Barnett, LCSW
Social Worker, Mount Sinai Hospital Hemophilia Treatment Center
Lucy Ramirez, MSW, LCSW
Clinical Social Worker, Rush Hemophilia & Thrombophilia Center
Speakers:
Kristina Haley, D.O., MCR
Associate Professor, Pediatric Hematology/Oncology
Director, The Hemophilia Center
Oregon Health & Science University, Portland, OR
Non-Factor Therapies: Where Are We Now?
Moderator:
Jessie Pindilli, BSN, RN
University of Wisconsin Hospital & Clinics
UWHC Comprehensive Program for Bleeding Disorders
Speaker:
Jennifer Maahs, RN-BC, MSN, PNP
Pediatric Nurse Practitioner
Indiana Hemophilia and Thrombosis Center, Indianapolis, IN
After completing this activity, the participant should be better able to:
Ankle Replacements and Bleeding Disorders: What's a PT to do?
NBDF provides free quality education on issues that matter to the bleeding disorders community. This video is on ankle replacements and bleeding disorders, whats a PT to do
Fear of Needles and Needle Phobia: How Can We Help?
Moderators:
Christi Humphrey, LCSW
Social Worker, Hemophilia of Georgia, Inc.
Kathaleen M. Schnur, LCSW
Social Worker, Hemophilia Center of Western Pennsylvania
Speakers:
Annalise A. Guerra, MSW
Clinical Social Worker/Psychotherapist Univ. of Miami HTC
Emily Wheat, Ph.D.
Assistant Professor, Dept. of Pediatrics Psychologist,
University of Colorado, Hemophilia and Thrombophilia Center,
When the Problem is VII: Recognition and Treatment of Factor VII Deficiency
Moderator:
Kerry Hansen, BSN, RN
Nurse Clinician University of Minnesota Health,
Center for Bleeding and Clotting Disorders
Speaker:
Skye Peltier, MPH, PA-C
Physician Assistant
M Health Fairview Minneapolis, MN
After completing this activity, the participant should be better able to:
Hemophilia 101 for Physical Therapists
NBDF provides free quality education to healthcare providers in the bleeding disorders community. This video is on hemophilia 101 for physical therapists
Public Health: Health Equity
NOT AVAILABLE FOR CREDIT
Speakers will discuss several topics: understanding and addressing sickle cell disease healthcare disparities, health equity issues impacting optimal care in thalassemia, health equity, and the influence on blood clots – pre and post COVID data, and the burden of healthcare in hereditary hemorrhagic telangiectasia.
The Shoulder: Stop or Go
NBDF provides free quality education to healthcare providers in the bleeding disorders community. This video is on the shoulder stop or go
Telehealth: Expanding Our Reach
Moderator:
Penni J. Smith, MPA, BSN, RN-BC
Hemophilia/Hematology RN Coordinator
Utah Center for Bleeding and Clotting Disorders, Primary Children’s Hospital
Speakers:
Kimberly Hurdstrom, RN, BSN, CCCTM
Hemophilia & Thrombosis Center University of Colorado School of Medicine University of Colorado Denver
International VWD Guidelines and Novel Therapies for VWD
Moderator:
Christopher E. Walsh, MD, PhD
Associate Professor of Medicine, Division of Hematology & Medical Oncology
Icahn School of Medicine at Mount Sinai
Director, Hemophilia Treatment Center, Mount Sinai Hospital, NY
Speakers:
Cécile Denis, Ph.D.
Director of Research French National Institute of Health and Medical Research (INSERM) Le Kremlin-Bicêtre, Cedex, France
Looking Forward: New Therapies on the Horizon
Moderator:
Emily Bisson, APRN, CPNP
Nurse Practitioner, Connecticut Children’s Medical Center
Speaker:
Stacy E. Croteau, MD, MMS
Director, Hemophilia/VWD Program Boston Children’s Hospital
Medical Director, Boston Hemophilia Ctr Assistant Professor of Pediatrics, Harvard Medical School
After completing this activity, the participant should be better able to:
Change: A Caregiver's Inner Dialogue About Loss, Body, and Illness
Moderators:
Denise Lowery, LCSW
Social Worker, UC Davis Medical Center
Alfredo A. Narvaez, Jr., MSW, LMSW
Social Worker, Louisiana Comprehensive Hemophilia Center
Tulane University Medical Center
Speaker:
Kevin Quiles, M.Div., M.A., LPC, RYT-200
Licensed Professional Counselor
Canton, GA
After completing this activity, the participant should be better able to:
The Nuts and Bolts of Non-Factor Therapy and Physical Therapy
NBDF provides free quality education to healthcare providers in the bleeding disorders community. This video is on the nuts and bolts of non factor therapy and physical therapy
Public Health: Women's Health Issues
NOT AVAILABLE FOR CREDIT
Speakers will discuss a spectrum of topics: maternal mortality and blood disorders, Healthy People 2020 and females with von Willebrand disease, mentors for workforce development and research, the Women in Research Engaged While Distancing (WIRED) program, and the use of Community Voices in Research (CVR) to promote self-advocacy and empowerment for women.
Social Work Precon: Race, Racism, and Implicit Bias: What can we do about it?
Moderators:
Betsy Boegeman, MSW, LGSW, LADC
Social Worker
Children’s Minnesota Cancer & Blood Disorders Program
Amanda Stahl, MSW, LICSW
Clinical Social Worker
Boston Hemophilia Center, Brigham and Women’s Hospital
Speaker:
Ed Morales, MPP, MSW, LICSW
Principal
Socorro Consulting Minneapolis, MN
After completing this activity, the participant should be better able to:
Muscle Bleeds: Presentation, Challenges and Interventions with focus on kinesiotaping
NBDF provides free quality education to healthcare providers in the bleeding disorders community. This video is on muscle bleeds presentation challenges and interventions with focus on kinesiotaping
Nursing Precon: von Wille What?
Moderator:
Jennifer Donkin, RN, DNP, CPNP, CFNP
Nurse Practitioner, Children's Hospital of Los Angeles
Speakers:
Amanda Greene, RN, MSN
Hemophilia Pediatric Lead Nurse Coordinator
Comprehensive Bleeding Disorders Center of Emory University
and Children’s Healthcare of Atlanta
Kimber Blackwell, MPAS, PA-C
Physician Assistant, Indiana Hemophilia and Thrombosis Center, Indianapolis, IN
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 Pre Con: Future Therapies and Surveillance for Blood Disorders
NOT AVAILABLE FOR CREDIT
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.
Management of Patients on Novel Therapies
*ANCC
Moderators:
Penny Kumpf, RN-BC, BSN
Von Willebrand Outreach Nurse, Hemophilia of Georgia
Kelly Tickle, MSN, APN, PPCNP-BC<
Pediatric Nurse Practitioner, Children’s Healthcare of Atlanta
Speakers:
Lydia Johnson, RN, BSN
Hemostasis Clinical Nurse Coordinator
SSM Cardinal Glennon Children’s Medical Center
Saint Louis Univ. Dept of Pediatrics
Our Resilient Minds, Bodies and Souls: Empowerment Through Storytelling
*ASWB
Moderators:
Damia Dillard, LCSW
Social Worker, UC Davis Medical Center
Denise Lowery, LCSW
Social Worker, UC Davis Medical Center
Speaker:
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:
Poverty and Barriers in Healthcare
*ASWB
Moderator:
Christi Humphrey, LCSW
Social Worker, Hemophilia of Georgia, Inc.
Speakers:
Diane Bartlett, LCSW, OSW-C
Social Worker
St. Luke’s Hemophilia Center
Robert Louden, MSW, LCSW
Social Worker
Indiana Hemophilia & Thrombosis Center
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:
Covid-19 and Provider Mental Health
*ASWB
Moderators:
Amanda Stahl, MSW, LICSW
Clinical Social Worker
Boston Hemophilia Center, Brigham and Women’s Hospital
Lucy Ramirez, MSW, LCSW
Clinical Social Worker, Rush Hemophilia & Thrombophilia Center
Speaker:
Jeannie Aschkenasy, PhD
Psychologist
Rush Hemophilia and Thrombophilia Center
Rush University Medical Center
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:
Care Coordination for the Aging Bleeding Disorders Population
*ANCC
Moderator:
Tamara Bullock, RN-BC, BSN
Hemophilia Community Nurse, University of Iowa Hospitals and Clinics
Speakers:
Jeff Cornett, MSN, RN
Vice President of Research and Public Policy
Hemophilia of Georgia
Shanna Mattis, MPH
Public Health Associate and Social Worker
Hemophilia of Georgia Center for Bleeding and Clotting at Emory University
Gynecologic Management for Female with Bleeding Disorders
*ANCC
Moderator:
Kelly Tickle, MSN, APN, PPCNP-BC
Pediatric Nurse Practitioner, Children’s Healthcare of Atlanta
Speaker:
Kalinda Woods, MD, FACOG
Assistant Professor, Department of Gynecology and Obstetrics
Emory University School of Medicine
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:
Walking a New Pathway: Coagulation & Measures of Hemostasis
*ANCC
Moderator:
Kerry Hansen, RN
Nurse Clinician
University of Minnesota Health, Center for Bleeding and Clotting Disorders
Speaker:
Jim Munn, MS, BS, BSN, RN-BC
Program Nurse Coordinator
Hemophilia and Coagulation Disorders Center, University of Michigan
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:
The Next Wave: Clinical Updates on New and Emerging Treatment Options in Hemophilia (1)
*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:
The Next Wave: Clinical Updates on New and Emerging Treatment Options in Hemophilia (2)
*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:
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