Communicating with Providers

YOU are your most important advocate in the health care system. If you have a child, you are also their most important advocate. In order to be a strong advocate for yourself and/or your child, it is important for you to learn how to make your concerns heard and understood. By improving communication and advocacy skills, participants will learn to speak more effectively and secure appropriate treatment.

How Do YOU Navigate?

Learning through the lived experiences of others is helpful in navigating the landscape of bleeding disorder care. In this workshop, participants will be given an opportunity to learn through investigating scenarios building on the previously delivered material but also through discussions of the issues they are facing in their own everyday life. By the end, participants will receive practical tips and will feel connected and empowered.

Knowing the Players: Being a Savvy Consumer

Having a bleeding disorder comes with great responsibility to get the best care possible. This interactive session will give you information on the sometimes confusing acronyms – HTC, 340B, HRSA, etc. – which can be a roadblock to getting care. We will also cover the critical questions to ask when choosing a factor provider. Finally, we will address the responsibility that parents, patients, pharmaceutical, and homecare representatives have in following the rules and laws that affect us all.

Choose to Take Control

Being a good consumer is more than just access to products and care, it is also about knowing the do’s and don’ts that impact your daily life with a bleeding disorder. It’s about understanding your disease, choosing a care team, clearly communicating your needs and accepting responsibility for making the decisions that ensure your safety and wellbeing. During this interactive presentation, we will discuss tips, tricks and tools available to help you become a better self-advocate and an overall good consumer.

Looking from the Outside in: Musculoskeletal Ultrasound

Ultrasound of the joints and muscles is slowly becoming a staple in many Hemophilia Treatment Centers to detect bleeding episodes and to follow joint health over a long time. But how does this work and what are the benefits? Participants will walk away feeling informed about this innovative technique and being able to engage with their healthcare provider about joint health.

El Costo de la Reentrada

Después de un año difícil impulsado por la pandemia de COVID19, esperamos una nueva normalidad. Pero, ¿cómo afecta la reincorporación a la sociedad a la salud mental y cuáles son las implicaciones específicas para la comunidad de trastornos hemorrágicos? En esta sesión desmenuzaremos este tema y recibiremos consejos prácticos de un profesional de la salud mental para combatir el desgaste emocional.

Pregunte a los expertos

¿Tiene una pregunta candente que hacerle a nuestro panel de expertos? Esta sesión ofrecerá a los participantes la oportunidad de interactuar, participar y hacer preguntas que inviten a la reflexión a un panel de proveedores de atención médica interdisciplinarios en tiempo real. Esta discusión incluirá Miguel Escobar, MD; Kelli Fraga, PT, DPT; Sabrina Farina, LMSW

Women Bleed Too

Women and girls with bleeding disorders often deal with particular issues and taboos related to diagnosis, symptoms, access to care. In this session, an expert who works to improve the quality of life for women and girls with bleeding disorders will discuss essential information on the challenges of getting a diagnosis and accessing care and treatment. In addition, an affected individual will share their experience as a woman with a bleeding disorder.

What Everyone Who Treats with Factor Needs To Know About Inhibitors

If you treat with clotting factor, you may be at risk of developing an inhibitor. This workshop is for people who do not have an inhibitor but want to learn more about risk. We will explain the basics of inhibitors, how they develop, and how and why you should have a conversation with your healthcare provider about screening and monitoring for an inhibitor.

Medicinas caseras

Muchas familias y culturas tienen sus propios remedios caseros "especializados" para tratamientos y curas. Esta sesión explorará cuántos de estos remedios caseros a veces pueden causar daño y entrar en conflicto con el tratamiento. Many families and cultures have their own "specialized" home remedies and so-called cures. This session will explore how many of these home remedies can sometimes cause harm and interfere with treatment.

De lo que todos los que tratan con factor deben saber sobre los Inhibidores

Si trata con factor de coagulación, puede estar en riesgo de desarrollar un inhibidor. Este taller es para personas que no tienen un inhibidor pero desean aprender más sobre el riesgo. Explicaremos los conceptos básicos de los inhibidores, cómo se desarrollan y cómo y por qué debería conversar con su proveedor de atención médica sobre la detección de un inhibidor. If you treat with clotting factor, you may be at risk of developing an inhibitor. This workshop is for people who do not have an inhibitor but want to learn more about risk.

Basics: VWD

This session will review the signs and symptoms of von Willebrand disease, discuss genetics and inheritance patterns, and define and compare the three types of VWD. The presentation will also cover laboratory diagnosis and its challenges, and the therapeutic options available for people with VWD. In addition, you will learn important skills to advocate for yourself and loved ones.

Basics: Hemophilia

Whether you or someone in your family has been recently diagnosed with hemophilia, or you've lived with hemophilia your entire life and want a refresher on the fundamentals, this session is for you. We will explain what hemophilia is, how it's treated, and what issues may arise at different life stages.

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.

The Advantage of Prophylaxis for Adults with Joint Issues

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"

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:

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  

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